Help

The title is not a cry for it.

Help!

On help

I learned recently that Sophie was eligible to receive a home health aide, but I felt dubious about the whole thing for reasons I won't spell out since you've heard them ad nauseum for as long as I've been tapping away here. When she received a very generous number of hours, thanks to the great State of California and the Regional Center, I told my father and he said, I find that hard to believe, and I said, I know. I told my therapist about it, and she said, Wonderful! and I said, What will I do with myself in the mornings? and she said, Rest! and I said, What do you mean? and she said, Lie on your bed and read or go into your room and write and I mused on that for a while, lying there on the couch in her office where I've spilled the darkest of my guts and wept and been guided and helped for years. Asking and receiving help is acknowledged by most caregivers I know as two of the most difficult things to do, and while a lot of that has to do with the actual busy brain and body work it takes in terms of time and arrangement (CEO of Sophie, Inc. reports), a lot, I think, has to do with this deep, psychic attachment we have to our unique children and young adults.  It's less about burden, more about acceptance  and everything about love. Throw in guilt and responsibility and the ridiculous and very much American ideals of individualism and pull yourself up by your bootstraps culture, coupled by an ableist society that looks on disability as something so hideous and burdensome that we hear things like would you have had an abortion if you knew? or I'd rather be dead than dependent on someone or I could never do what you do -- well, it's damn hard to ask for help and even harder to receive it.

I am receiving it, Reader.

Sophie's morning aide is a delightful young woman who comes to the house weekday mornings and gets Sophie up and dressed and groomed (see above). She makes her breakfast and feeds her, brushes her teeth, packs up her stuff that she needs for her adult day program and then drives her there in our accessible vehicle. She talks to Sophie and is incredibly gentle and meticulous about her hygiene, the style of clothes she will wear that day and can fix Sophie's outrageous hair into all manner of amazing styles. She gives her choices and treats her with dignity and respect and humor. It's unbelievable, actually. The only thing that she's not allowed to do is administer medication, so I do that. It took me some time to train her and even more time to will myself into letting go, but guess what?

Reader, I am resting.
























The universe is abundant.








Here's that Extreme Parent Video Project that I made years and years ago with the help of other caregivers, many of whom I had only met online. You'll see that asking for and receiving help was a common theme. Enjoy, share, ask for and receive with gratitude and grace.

Shouting for Help

I missed two days of posting, probably for the first time in six years, but it felt right to take a break, and just watch lacrosse for two days. It was a fine weekend, albeit exhausting, and while not a real sports mother, I've grown to like watching my son play lacrosse. Since the games are only one hour, there's no time to feel bored, and the venue for the tournament was beautiful, albeit a repurposing of a landfill. The skies were big with dragon clouds, Bob Dylan's song on repeat in my head, and since I know few people on Henry's team, I was left largely to myself.

I NEED HELP! 

I heard this over and over, shouted in hoarse, deep man-boy voices during the games.

HELP HIM OUT!  HE NEEDS HELP!

I heard that, too, in even deeper and louder shouts from the coaches on the sidelines.

The boys -- young men, really -- scramble to help one another, seem to know implicitly who needs help, when and how much. The game is often a violent one, and when too violent, yellow flags fly, a boy is sent off the field to kneel in contrition for however many seconds the umpire assigns, after those seconds pass, he stands up and runs back out to join in chasing that small, hard white ball, scooping it up, passing it to another boy whose position is to race toward the net, aim toward it through the phalanx of players helping out their goalie.

Get ready because other than dragon clouds and only knowing careless love, being alone on a lacrosse field for two days under the wide blue sky calls for more introspection and possibly, even, a strained metaphor from the likes of non-athletic me.

It struck me that shouting for help and ordering help during a lacrosse game is completely acceptable, but that many of us who care for kids with disabilities or our aged parents for years and even decades,  or those with chronic illnesses themselves, rarely ask for help, much less shout for it. Many of us, when we do ask for help, do so reluctantly, whether it's for money, for relief, for an open ear or arms to hold us. The longer you go, the more difficult it is to recognize your need for help and to ask for it. I'd venture to say, too, that most people don't even realize that we might need help, probably because we don't ask for it, or because they think we've got it all down, at this point.  I believe that in the absence of crisis, people feel a sort of compassion fatigue when it comes down to dealing with people like us. I confess to feeling a gnawing resentment about this and a quiet acceptance. Both feelings -- resentment and acceptance -- come and go, the one small, hard and painful, much like the lacrosse ball, the other majestic in its breadth, much like the clouds and that sky and the lonely path ahead.

Maybe it's time to start shouting. Maybe it's time for you, too, to shout for help. Maybe it's time for you to shout for others to help. Maybe it's time for you to help.