Once Again: Learning Perspective

Bobby, age 4, and Rick

I delayed enough on the guardianship papers last year that I got an extra month to fill them out this time, so instead of having to face checking boxes and listing deficits in December, around Bobby's birthday, I spent a half hour last night doing it as we sat together as a family watching Big Bang Theory, which we're recycling through again, much like we went through Thomas the Tank Engine and Barney when Bobby was four.

I compartmentalized to fill it out without breaking down or feeling anything too heavy, and Rick had picked up a copy of last year's paperwork so I could look from it to the new one and simply copy where appropriate.

When it was through and I handed it over to Rick so he could drop it off today, it hit me, that wave of sorrow and heart break and it lingered the rest of the evening. One of the questions is whether anything had changed that made guardianship no longer necessary followed by a question of the reasons why guardianship was still needed. I hate those questions. One's just a simple check, but the other I have to list why we can't let him manage his own life. 

And that, whether I want to feel that way or not, cuts me to the core.

I talked with Rick afterwards, trying to articulate that pain and why I felt it should be something I could let go of, not feel.

Alright, he needs help managing his daily life, reminders and prompts from all of us to get through the day, even though he's learned to set alarms on his phone to remind him (he doesn't always have his phone on him and he's an expert at turning the alarm off and forgetting to do what it was he was supposed to). 

You know what, lots of us need some help with things. Okay, he needs a little more, and all of our lives are perhaps more interdependent than so-called normal households. Interdependent. I rely on him and the girls and Rick for help with things I can't do anymore because of health issues. They gladly and freely help, just as I gladly and freely help them where they need help.

Is this really such a sad thing? When I'm not filling out crappy paperwork, I resoundingly say no.

So Rick and I talked through our feelings to get to the other side--we don't like this yearly ritual, and it hurts, but I think, maybe, it's getting a little easier to let that sorrow go.

We went through our definition of a successful life for our children.

Are they happy?
Are they of service?
Do they have what they need?

And the answer is yes.
Abundantly yes.

When Bobby was nine he had a stroke, and we learned he had a blood clotting disorder, and that Rick did too. And we had to redefine what we considered success and what mattered most when living with a disorder that could and does cause sudden death.

Is he happy? Is he of service (because everyone needs to be of service, to feel needed)? Does he have what he needs? 

We brought him home from school and home schooled him. We focused on his areas of interest. We worked at giving him a rich and fulfilling life that had challenges but that avoided negative comparisons of typically developing peers and any chance of being bullied.

Here we are, fifteen years post stroke, blessed to have not had another episode, and the answers to those questions, to our beliefs about what makes a good life, are answered in the affirmative. He is happy. He is of tremendous service. He has a good life, the life he wants.

And I, looking at his sweet face, cannot feel sorrow over that.
And will not.


LindaWarren said...

My almost-nineteen year-old daughter wanted to live on her own. She craved an apartment with responsibility, and her own car. She had end-stage Cystic Fibrosis. Instead of trying to cage her so I would know she was cared for, I set her free. I was still there for her, as were her brothers and grandmother, but six months after the experiment in freedom began, she died. She could not manage her affairs. She could not remain responsible for her meds and treatments. She was overwhelmed. So many times I regretted the choice I made to set her free; however there are so many things much worse than just dying. She needed that time to live on her own. She had never stretched forth her own wings. Looking back, I'm so sad. Her birthday is next month, and I'm crying as I type this, but the truth is...I let go because I love her. If I had held on, it was also because I loved her. No one has the right to judge that. My heart breaks as I read this conflict of yours. Thank you for sharing this.

melbo said...

This post is kind of heartbreaking in a good way. Does that make sense? You and Rick are the best guardians there is. Thinking of you all. xxxxx

K Wombles said...

Oh Linda, I'm so sorry. You're right--no one has the right to judge--so many times with medically fragile and otherwise disabled children, there are no right answers (and with any child--we're all flying in the dark). There's just the best we could do at the time. I'm so sorry for your loss.