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Pig is ready with the enchiladas.

Enchiladas are served.

And now, the hnt part:

Enchiladas are gone.

When M. failed to answer the door, her daughter did not find anything strange. It was often that the old woman was napping, or upstairs and not quick to descend. A key turned the door, and all in the house was quiet. Did M. have an appointment she forgot to mention? Had a neighbor called? The youngest daughter opened the garage door to see if the car was still there. It was. And behind it, she found the carefully laid out cot, the empty bottle of sleeping pills. The keys were still in the ignition, but the gas had probably long run out.

The death was a tragedy, we all knew. M. was not so old, after all, in splendid health, we thought. It took a long time for anyone beyond the one daughter and her husband to realize that it was a suicide, and as it was, few people were ever supposed to know. The death by one’s own hands seemed too messy, too questionable, too unsuitable for a reputable family. And yet, the daughter who found her mother cold and inexplicably dead that morning said that she would have done the same thing.

Up to the time I knew of the suicide, M. seemed an amazingly resilient woman. Letters and other documents found after M.’s death hinted at a less than auspicious diagnosis, perhaps from a cardiologist. One thing was certain, though: M. had said many times that she never wanted to be a burden to her children or anyone else. She had enjoyed a high level of independence her whole life. What did life mean to her if she needed assistance?

A suicide must always leave questions unanswered, but the questions it poses must always reach far beyond the life that is taken. I was surprised to learn that the daughter so fully supported her mother’s actions. Her own pronouncement of similar suicidal intentions if faced with similar potential dependency cited anthropological examples of the practice of “going off to die.”

I was judgmental of the dead woman, hurt. How could someone I loved and admired not let the people who loved her actually care for her when she needed them? What makes life worthwhile? Can we even answer those questions ourselves?

Life can be intolerably painful in so many ways. I cannot imagine what for certain caused M. to end her life, or what I would do in her place. After the suicide, though, the context of the family began to make more sense, and I was out of context. Never being a burden seemed more a selfish thing, never allowing another person to extend a kindness, to serve a meal, to make a bed: not good enough, perhaps? Not thoughtful, but selfish. Always giving, but never receiving: yes! there is a selfishness in that. The familial stoicism was overbearing; pain, heartbreak and illness were impossible to discuss aloud, but were whispered in tributes to the character of those who hid their weaknesses. Bad things simply did not exist in that make-believe world.

Oh, demons exist everywhere, but they become dangerous when they are hiding. Everyone knows about the bear hunt:

“We can’t go over it. We can’t go under it. Oh no! We have to go through it!”*

Go through! Go through! Go through this life. Why hide? I want to love, and I want to rejoice in the real connections we have, the efforts we make, the love we give to one another… and the love we courageously take.

*From Michael Rosen and Helen Oxenbury, We’re Going On a Bear Hunt, 1989.

Mr. Bunny is going to be disappointed… or more likely, my kids are going to be sad not to see Mr. Bunny hopping around our backyard jungle. Why?

The jungle is gone. Anticipating today’s heat wave and the mosquitoes that normally come with it, I woke up early to pull the lawn mower out of the garage for the first time this year.

I realize it’s a little late, but if you saw my yard, you would understand how I have gotten away with not cutting the grass all spring. There is practically no grass. The yard itself is small, but not tiny, and it should have grass. Instead, it is a mixture of sand, rocks, mulched leaves, pine needles, and weeds. Oh…. and legos. Lately, though, the weeds have gotten a little high, providing nourishment for the rabbits, but a big, buggy mess for me. The time to cut had come.

Over the past several years, I have developed a thing for power tools. They come in handy for projects, and there is something almost cathartic about cutting things down, or blowing them away, making holes in them, sanding them smooth. I am a year older and wiser now, and I have started buying my own peonies again, and have more or less given up on the idea of finding true love. So, in the spirit of do-it-yourselfness, I find myself enjoying these little moments of accomplishment more than I resent them, much to the disbelief of my mom and brother. It is true that they were the ones watching This Old House while I headed out the door on whatever night that show was on, but I did absorb a few things. Or at least, I have Google.

I didn’t need Google or This Old House just to mow the lawn. For one thing, I never recall a discussion of lawn mowing, or the importance of removing legos from the yard before mowing. Amazing how big a bruise those little plastic bricks can make! I finished, and swept up (could not justify getting out the leaf blower). I scraped more paint off the front porch (which is almost ready for the new coat). A shovel (or the leaf blower) may have been a more appropriate tool than a broom in my daughters’ room. Nonetheless, the past-due book (Roald Dahl’s The Twits, if you are curious) has been recovered, and no one will be hiding in the school bathroom during library this week.

It is after 10:00 on a warm Saturday night, and I find myself self-sufficient, happy to have a fresh-cut yard, a few loads of laundry folded, a shoveled-out room, groceries in the kitchen. I am happy, but also a little… Well, words escape me. I love my house, love my kids, love life.

But really, is this all there is? I do cherish the bunnies that hop into my yard, the delicious feeling of heat that overwhelms me, makes me feel lazy, and then invigorated when the cool shower water hits my face. I love the haze after rain lets loose unexpectedly, and the evening that becomes balmy.

Yes, I do love all these things, but somehow today I find myself noticing the absence of a smile returned, or a gesture offered. I miss kisses, words, laughter. I miss breaths, heartbeats, steps. I miss things I have never had, and maybe I miss things that do not exist. In all the busy days that run together with no time left for anything at all outside of the bare necessities of life, I find it hard to stop—there is always more to do—and I wonder again, is this really all there is?

I love this life, this beautiful, imperfect life.. if only to know it, to wallow in it… but yes, I need more than power tools and a never-ending list of things to do. Passion, trust, fun… I want these things, too. I need them. And resignation never got me more than … resigned. Well, I am not quite ready to give in to cynicism.

Tomorrow is a new week.

“Is campaign a kind of alcoholic drink?”

My daughter has been fascinated by the Democratic nomination process, and now by the idea of running mates. She has one special interest: the school day should not be longer than it already is.

My twelve-year-old son laughed later when he heard what his sister had said. “No, no: you mean champagne!”

“Campaign is what is making everyone act so weird. I mean campaign!” my daughter insisted.

The party continues…

Yesterday, I found myself hopeful, excited by the symbolic gesture in a new name for the Department of Mental Retardation.

Those hopes were dashed when I saw the final Senate budget this morning. Despite amendments filed to restore cuts to crucial programs, those cuts remain. The budget for human services overall is not only disappointing; it is cruel. Some gains are there for select programs, but it sure hurts to look at the things that affect daily life for so many people, and realize that belts will tighten even more, and some will go without… again. I know that the economic realities are hurting everyone now, but these are programs that were suffering through the best of times. They may well now be on the brink of collapse.

For all of the happy moments we celebrate in symbolic gestures like inclusion classrooms, we continue to underfund programs that help people with disabilities. The ultimate price of this systemic abuse is high, as human beings lose their ability to work and to live somewhat independently. It trickles down levels, making the doling out of portions into a game. And far too often, those who figure out how to play that game and have the time to devote to it beat out the ones who need help the most. More and more families find themselves also unable to work, while the care of a loved one falls on their shoulders. We have let this situation grow increasingly worse for years–at least twenty years now. The crisis in the economy only intensifies the situation, as competition for those dwindling funds grows, too.

Names mean a lot. Gestures mean a lot. Now let’s put our money where our mouth is.

In a few short moments, the three kids and I will head out to Dairy Queen. It is a treat, to be sure, but symbolically it is an attempt to salvage a little joy from this weekend. I really don’t care about ice cream tonight; I just want to leave the house and have some feeling of being a happy family.

I have come to realize that the same issues that made me give up custody of my son with developmental disabilities in August are the same that may make it impossible for me to take him overnight at all. Those issues all revolve around one thing, and that one thing is perhaps the most damning defining moment for a person with a disability.

That one thing is another person. It is absolutely necessary to have more than one adult to take care of my son at any given time. This does not require a mere warm body. To help, the person needs to be vigilant about safety issues, but also patient enough to withstand a bite, a grab, a few solid hours of changing pants if his tummy is upset, or sitting outside his room on a wild night that he cannot fall asleep. It takes a person who will show up at the times that are likely to be challenging, and show up reliably. It takes a person who doesn’t mind the other kids and the holes in the wall, the clutter everywhere (which would be less of an issue with more help). It takes a strong person, who can help me get him out of harm’s way if he flops on the ground—sometimes inconveniently—and refuses to move, a person who can do this all with a smile, and some degree of understanding. It takes a kind person. It takes a person who will be all those things for the going state rate of $10.84 per hour… well, assuming that my son’s present custodian reapplies him for the MassHealth benefits that pay it.

Last year, when I was the custodial parent and called the shots, I was offered an opportunity to return to school in a prestigious disability program. I would never have attempted a demanding fellowship if I had not been incredibly lucky at first. A full-of-life, smart, loving young woman came from miles away to help me care for my son nearly everyday for several months. For her, as much as she liked us, it was a career move, and a good one at that. Life was good for all of us, and we laughed a lot, had fun. But it was inevitable that she had to move on to greener (and more lucrative) pastures when opportunity called.

Before she left, I started looking, and did not find in the six weeks I knew she was leaving. Within a short time, I was spending most of my time without children advertising the position in every thinkable way, then interviewing candidates. Some interesting people came into our lives for moments: a Harvard pre-med student, a part-time nanny who was working on a master’s in social work, a stately woman whose father had been killed by Idi Amin, and many, many more. Before finding help, I conducted thirty-two interviews, hired ten marvelous candidates (all of whom quit by the first day after coming for orientation), fired two (negligence does not even begin to describe..), and tried to write a grant for a project that would link college students and families of children with special needs. The project seemed doomed from the start in the midst of various regulations and other difficulties, not the least of which was the prospect of defining myself as a non-profit organization. It seemed a bit much. I sat in on organizational meetings around a state law that had been passed to address the problems with this workforce. As my studies progressed, I shaped my work around this issue, one that affects so many people. I was exhausted, and still had no answers, not even from the highest levels of state agencies. At last, months later, we finally found one person, a caring young lady who had known my son for several years. Relief…

After one difficult evening, though, she failed to show up for work the next day. She had hurt her back, she said in a message, and I called to see if she was all right. She never answered her phone, or email, to me again. The fallout was jarring to the kids, and to me. I advertised again, somewhat cynically realizing that the people who enter our home also enter our hearts. I started the quest again, but this time had no luck. Ultimately, I quit a job I had taken at the end of my fellowship, telling my supervisor through tears that I could not financially support my kids and care for them, too. And then, I made an even more difficult decision, the hardest thing… It was perhaps the only choice, but in so many ways it has always felt like the worst choice.

I gave up.

I realize that this statement goes against my happiest thoughts about my family, the ones like those I wrote several weeks ago, finding the joy in an ordinary day. The day I described there was an ordinary day… extraordinary, to be honest.

The truth is that there are moments that are hard, grueling, moments when the facts of toilet training deficiencies and behaviors resulting from nonverbal realities can bring me to my knees, literally.

I posted nothing here last week about Mother’s Day. Recovering from another back injury after a walk with my son, I was not in a joyous mood about the holiday, despite the efforts from all of my kids. They tried, as much as kids can; they really did. It was not my weekend to spend with them, and changing things around for a day never works very well; it is confusing, most of all to a child with autism. I have never had a bad back, but I cannot lift an obstinate 120 pounds, either.

It is moments like this that destroy the mother-child bond. I find myself less of a mother as I admit this, but I can feel it for days after something bad happens. I feel it in my recoiling when my son hugs me, my reluctance to endure another bite tearing me apart as I want to love him freely and without hesitation. Oh, I know he does it not out of cruelty, but out of frustration, in moments that his ears hurt, or that I failed to understand him, or that he just needed to feel that sensation for some reason I can only try to acknowledge.

Agencies across our Commonwealth, across the country, struggle with the lack of funding for people who have no voice, or a quiet one. Families besides mine are being ripped apart by lack of support, despite the best efforts from groups that lobby for the small legislative victories that lead to systems change. Maybe attitudes change along the way, and pave the way toward better times. But when money is tight and economic predictions are dire, altruism often takes the hit first.

There has to be a better way.

Pistachio ice cream is my favorite. The kind I like may not be the finest, but it is the greenest, has the most almond extract flavoring—way too much, but kind of addictive—and is filled with salty pistachios. Friendly’s pulls off this combination rather well, especially considering that the brand has been on sale for the past couple of weeks.

Remember when you were a kid, and you reached down in the cereal box, all the way to the bottom, to find the prize. My brother and I used to pour ENORMOUS bowls of cereal, professing outrageous hunger. We had a yellow Pyrex bowl that came in a set with smaller ones, red, green, and turquoise. The turquoise was the egg-mixing bowl, and the other two broke before I remember. The yellow one was used only for popcorn and potato salad. We poured the cereal into that bowl. Once when we tried that trick, my mom made us eat what we had poured. From then on, we waited more patiently for our prizes.

Usually it was all for something worthless, too, not unlike a Happy Meal toy. Once in a while, though, a Matchbox car could make it all worthwhile.

Jump forward a few years, and the prize is pistachios. Tonight I am not content to have a regular bowl of ice cream, but am hunting through the box, ignoring ice cream just to get at them.

Of course, picking all the good stuff out is not very adult of me. I do know that when I do that, the rest is more or less spoiled—or, at least, not as special without the most desired contents still inside.

But sometimes, greed gets the better of me, going after the good stuff all at once, leaving the rest to face later. And yes, it is worth it.

Just don’t tell my kids.

I won something!

After the woman read my number, she directed me to an assortment of beautiful glass, blown by the woman’s son. It was all exquisite: pendants and several small vases. But one caught my eye. It has been sitting on the shelf above my writing desk ever since. I look at it often, the way it catches the light.

I wanted to show you, and tried several more normal photos, like this:

and this:

This is a vase.

I do not have flowers in my prize, but find myself more gazing at it, letting my mind wander. Words come more easily to me than images. I pick up my small treasure, and gaze down inside, the smoke and haze and sweetness seducing me into my favorite color.

That’s better. Yes, just like that…