Thursday, July 31, 2014


We are moving right along with attaining guardianship. I say "we" but mean "I." Only one person can be named guardian, and if/when I am no longer able to perform the duties, the whole long, arduous, expensive process begins all over again.

Before a child turns 18 a parent can name a guardian in their will, and subsequent guardians, should the need ever arise. For whatever reason, one cannot do that after the "child" is 18. I will be awarded guardianship of the person I've been taking care of 24/7 for 18 years, but cannot legally name my successor.


I dreaded the arrival of the processor, the person that would come at an appointed time and hand Wil a stack of papers and let him know he was being officially "served." That whole thing took less than 2 minutes and the woman could not have been any kinder. Nonetheless, the emotional toll was high and began months (years) ago in anticipation of all that it represented.

The next "ordeal" I fretted about was the court visitor. We were to expect someone to come to the house and "vet" us, for lack of a better word. Wil had to be there, I had to be there, and so I decided STM had to be there, too. Again, the nicest woman came at the appointed time. She was respectful, natural, kind, and only asked Wil a handful of questions. "I don't have any more questions for you, do you have any more for me?" she asked. He indicated no, and then she asked, "Is it OK if I ask your parents some more questions?" He then went upstairs and she quietly, graciously, asked us a few more questions. She wasn't in our house more than 25 minutes.

"Technically, I'm supposed to ask a whole bunch more questions, but I thought they'd confuse and upset him, and it's clear to me that guardianship is appropriate," she said. She is a psychologist who has done this for years. "They send us out on each and every case because every once and awhile there is a need to protect someone for whom guardianship is not appropriate."

We received word that her vetting was complete, she had obtained information from our primary care doctor, our behavioral/developmental pediatrician and a few others; all in full support of me being Wil's legal guardian.

It's a weird thing to feel like you "won," something that is so obvious, so necessary, so matter-of-fact. It's a weird thing to celebrate that your child is so disabled that everyone can see he is so disabled. It's a weird thing to be glad you "get" to keep doing what you've always been doing.

And yet, I have won.

And yet, I am celebrating.

And yet, I am glad.

There is a peace prevailing that has not been around for at least a full year. Now I am "this" close to obtaining guardianship. I have a stack of documents 8" high that I will take to my Social Security appointment on Tuesday. Included in the stack is a letter from Wil's behavioral/developmental pediatrician explaining her recommendation that I not take him to his own appointment. I have been filled with angst over that damn appointment for months, but now that it's five days away, I'm very calm.

It's so true that the fear of it, is way, way, way worse than the reality of it. Maybe it's just the way grief works, another layer is peeled back and you are exposed and vulnerable, and then you motor through until it's all swept into the cog of your normal. Not everyone's normal, but yours. Your different, but very much OK normal. Your normal that is normal if you stop comparing yourself, your child, your life to anyone and everyone else's. Your normal that is not going anywhere, so you might as well embrace it and get on with it. Your normal that is what it is: blessed.

2 comments: said...


Anonymous said...

Thank you Carrie, your blog touched upon everything I have been feeling as my son nears the age of 18. Last week we were applying for the developmental disabilities program through Clackamas County Social Services. A few questions for Jesse, and a 20-page booklet for me. Did you ever believe that this day would come? The day that we are making decisions about the future of our boys once they reach adulthood? Just yesterday Jesse was in preschool and we asked ourselves, will he ever be potty trained? Now, the decisions we have to make far outweigh something as simple as using the toilet properly. I appreciate the way you eloquently sum up the life and times of raising your son. We seem to be on a parallel course and so it seems particularly meaningful to me.