It is Chanukah!  We’ve already lit the first candle; said the blessings and sang the Chanukah song. For tonight there is peace in my home, for which I am very grateful.

And tonight there is one child at home,

like one candle,

PlantInPot

and one mother,

one wish; for love

to surround us, and

accompany us on our paths.

I recently started another Gratitude journal. Can’t hurt, could help. Speaking earlier today to a loved one about this, he remembered I’ve mentioned this is good self-therapy. To search for the nuggets of truth and inspiration that made our life a good one today — and to write it, so that it is more than a memory, but a truth.

The picture of the plant — a bit chewed on by our cat — with that intrepid sprout on its own, pushing itself on a new path … is a great visual image of what my life has felt like for so very long. A welcome symbol of the strength inherent in each of us, if only we can act on it.

Happy Chanukah! May the light continue to shine on each of us, and through each of us to another so that we can fill the empty spaces with love.

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I started my day crying. Thought I would be swamped in despair all day, but I wasn’t. The sun made an appearance this afternoon and I realized as I worked on an art project, I’d given up the gloominess with which I began this morning. I’m grateful it didn’t last.

My middle son who shares home with me has been very volatile lately. His moods come out in a second, no warning, he’s yelling in my face. And then a short while later he’ll be in his room and I hear him chuckling. That little sucker; making me upset as easy as pushing a button, and then he gets over it as quickly as a summer rain, while I’m fuming.

So many emotions. Unravelling

I’m starting a support group and hope to get as much out of it as the other participants, even though I’ll be the leader. I need it. Sometimes I’m so off balance. Tonight I went for an extra long walk, found myself really chugging up the hills. At least now I’m too tired for any strenuous emotions.

Hopefully  I’ll sleep well tonight. But if I wake, I lay my head on the pillow my grandson used when he used to stay over, and I fall back to sleep pretty quickly. Without letting myself get drawn into more emotions I’ll just say my grandson was withdrawn from our lives and this adds another layer of pain and grief that I carry around with me.

For tonight I’m playing some solitaire, then off to read my novel in bed before sleep. Everything else is put away. It’s all I can do today.

“The greatest challenge of the day is: how to bring about a revolution of the heart. A revolution that must start with each one of us.” Quote by Dorothy Day. nate's heart

If you are unfamiliar with the show “On being” you can find it online at OnBeing.org. On their blog the executive editor, Trent Gilliss imparts an important message for him; live “your love out loud even when it seems you have nothing to offer.” The show which aired May 28th this year is about Jean Vanier and called The Wisdom of Tenderness. Why am I telling you this?

I speak here often about living with a person with significant disabilities. One who is happy, melancholy, satisfied with his life in a moment, and also dissatisfied with his life in a moment. He wants more from life, and as much as I’ve put into creating and making this a reality, the walls I’ve encountered have been high and wide, daunting and discouraging. One learns to get up, dust oneself off, and try again. It is tiring though. IMG_0011

What ever happened to compassion for folks who need more help in their lives? I feel estranged sometimes from many fellow human beings who make little effort to understand our lives- my son’s and mine, and our forging ahead to create meaning and substance, liveliness and love in our lives, not necessarily with each other, but for each of us. For my son who wants to live in community, instead of with his mother. And for myself. I want to cease fighting for recognition of the right to fair and humane treatment of my son and others with disabilities, because others have recognized their worth. I want to have time to create my art, laugh with my friends, grow my own spirit and soul as aging puts an imprint on me that is indelible.

I often talk about Nato here. He has Down syndrome. Today I’m going to tell you that for the last 3 weeks or so, the Department of Human Services in our new home state, is investigating me for “adult abuse of a protected person.” I must be a very bad parent, let alone a very bad person, right? That’s why when his father walked away from his 5 children to concentrate his life around… what else, him, I carried on and haven’t dropped the reins yet. My children are now 38, 34, 32, 31 and 24. I’ll always be connected to them, but I didn’t expect to be doing intensive parenting at the age of 62!

In Montana, once an adult with disabilities qualifies for Med. Waiver services, there is a 7 to 10 year waiting list. Yup, seven to ten years. Apparently the operating belief is; if the disabled person is doing well at home, let them wait. Yet my son who’s been known to yell when upset, has been yelling with more volume and ferocity since we’ve moved. He was diagnosed with depression by the mental health agency I found here. I think he reacts in this way when he’s unhappy rather than depressed.    Nate's Heart

To give him a life here; I’m paying for him to attend day programs. Since we’ve increased his schedule- to make Nato happy, from 2 days, then to 3 days and currently 4 days, one of his siblings is helping to pay. He attends YMCA programs 3 afternoons a week; for an hour and a half each time. He is training for Spring Games, Special Olympics. He’s working with a great guy at Vocational Rehabilitation for the purpose of getting and holding onto a part time job doing what he loves; cooking.

Next week we meet with an Independent Living Counselor at a local center for Independent Living, so that they can help him learn “roommate rules,” one of which will be; don’t yell when you’re upset. So you want to know how/why I’m being investigated. The day AFTER a yelling spree that went on [and off and on, etc] over a whole day, I took him to the mental health agency we’ve been working with, to press them for some relief.  I may have said something that could be taken the wrong way. I guess I had my own little temper tantrum – after which I walked out in the hall and broke down in tears. Did I get help? No.

The local government agency’s rep. seems to be worried I’m not a good parent – and/or abusing my son. Frankly I think they’ve got it backward. He abuses me with his yelling/screaming. In disability circles we talk about re-directing our children’s behavior. This means trying to turn their attention onto something else. When my son is in this mode though, there is no way to redirect him. BirdInNest2014-2

Today I called the mental health agency and spoke with the director. You know for an agency that’s supposed to help us, I find it [cue up Twilight Zone music] odd to say the least, that Nato’s “care-giver” is the one indicting me and possibly his case manager was aware of the complaint before I was told. Meantime they want a meeting with us, but our schedule is too busy and I would prefer not working with them anymore given the “help” we’ve had so far !!!

Did I mention it was his “care-giver” who drove him to the secret meeting with the DHS woman? And he was in a room alone with the DHS woman- a COMPLETE stranger. Can you envision your child,  no matter their age, with significant disabilities, ALONE in a room with a stranger. Right. As if a person of standing has never done bad things to a child or disabled adult.

The DHS woman called me again today.  The home visit that lasted for an hour and half, digging into many aspects of my life  wasn’t enough… Accusing me of being a controlling parent – well what can I say? Of course I control our lives to a certain degree. And because I do, my son now finally, 6 months after moving here, a brand new place for both of us with a multi-year waiting list, despite all this, Nato has a full schedule that is making him happy.   N and Bob 2009

Oh and I devised a positive reinforcement system, to use with him, and he’s already gotten 2 games and a movie as a result. (He earns one when he’s had 3 to 6 good days). Since the mental health folks weren’t offering any help I researched and came up with my own solutions.

So, now this DHS woman says I can’t “control” Nato, in order to disassociate from the help we get from the mental health agency. What help? I asked. I’m doing it all. I’m finding other ways to work on this issue. I’m sorry I cannot trust someone who is supposed to have my child’s best interests at heart, then reports me as an abusive parent – because what? I’m supposed to sit at home and wait until they come up with a solution? Or allow them to MANIPULATE my son into a room alone with a stranger so that he can agree I’m an abusive parent?

Our spiritual leader found some assistance for me. Several hours of cleaning house did nothing to take away the higher blood pressure and headache caused by this morning’s judgment of me from the DHS woman. She told me she knows how a parent can influence a child’s decisions. So, another accusation against me. At any rate I called the number our Rabbi gave me, and spoke for almost 20 minutes with the state bureau chief of Adult Protective Services.

There’s some hope that this time I’ve been heard. Apparently he tells me they have 90 days to resolve this brou-ha. That leaves me about 70 days to find out if Big Brother has arrived, and they take my son out of our home together, or if we’re allowed to go our own stumbling way into the sunset. This is truly a nightmare.

Let you know, when I know.  (Photos; top, Nate’s heart, middle, baby birds in the nest, bottom, Nate on right with Bob) And yes, Nate stitched that heart all by himself!

I’m there too.

My friend has lived in a “place” for oldsters for the last 4 years. Her husband died about 3 years ago. Before that, her youngest child died after a long battle with cancer. And recently, less than a year ago, her only daughter died. She mourns the loss of her home which grounded her, gave her peace, supported her creativity, cushioned life’s hardest knocks. She’s mourning the loss of her daughter and son who’ve died, and loss of another who sees red when she says green.

Does old age bring happiness? The topic of a NYTimes op-ed  on December 5th brought many comments. These spoke to me; “I am 95, and my mind is still functioning, I have an excellent memory, and a great family and friends — all of whom are one, two or three generations younger than I. I am content, but not happy. I miss my husband and the many friends of my generation…” And this; “Mr. Brooks should walk down the halls of America’s nursing homes and see the number of elderly women sitting in the hall outside their rooms, staring listlessly into space most of the day, or hear their screams of “help!” at night, repeated again and again…”

BlessLIghtDec

The elderly in this country are essentially invisible. We have little role in society. Much of our time is spent looking after our aging bodies…” Last quote, I promise; “Mr. Brooks suggests that elders have more empathy, knowledge and maybe wisdom. Yes, some, but many do not. Surely he has seen the stubbornness, the surviving hatred and the loss of perspective that too often accompanies old age, not to mention of those in need, physically, emotionally and financially…”

Yesterday in a store I cringed at the check-out counter, seeing the employees with their cheery faces and wearing holiday hats. I hoped they would not bestow Christmas wishes upon me in that sugary sincerity that sets my teeth on edge. And not just because I’m not Christian, don’t celebrate Christmas and don’t appreciate all the frou-frou Christmas songs, decorations, false cheer that abounds. What about if you’re my friend, and cannot smile even with all this the in-your-face holiday cheerfulness?

LoveKindnessDec

I stand on the outside of Christmas yet I’m amazed when people stare at my son who talks too loud, or has a temper tantrum in a public place. Where’s the hearty ‘love your fellow man’ spirit? We all know to try not to judge the person badly for parking in the “Handicapped” space when we see them get out and walk to the store. We can’t always SEE a disability or disease or mental illness. (Card, right; Love and kindness are never wasted. They always make a difference. Quote by Barbara DeAngelis)

The word depression doesn’t light up on our foreheads for the rest of humanity. If they could see the word wouldn’t they take note and then treat the wearer tenderly and with compassion? Maybe. I don’t have answers to the December dilemma.This is what Jews call the fawning Christmas-ness that occurs in December that doesn’t include the stranger or the outsider. It also doesn’t offer the deep need we all have to connect sincerely to other people, to feel kindness and respect because we live and breathe, have hopes and dreams, no matter our age, infirmities, and abilities.

When I’ve been in depression I rarely went into stores beyond shopping for food. I didn’t pay attention to much of anything around me, or anyone. But I have learned to appreciate freedom from depression. And I love my friend and feel pain for her losses and her circumstances. Sometimes all we can do is feel. I’ve been carrying this quote around with me, by Richard S. Wheeler a western novelist from a book published in 1983, Winter Grass;

“We have to keep letting go of things before we can grasp the future. The more we cling to what was, the more we freeze ourselves where we are. Like excess baggage on a long journey. How do we get where we’re going encumbered by it all?”

Here’s a young woman who figured out how to let go. Trash the Dress.

Stay warm.

P.S. The top card has an Irish blessing; “May the blessing of light be on you. Light without and light within.” I apologize for getting this out today, the first day of January. Originally written December 5th. Oh well, these things happen.

ChanCard

Wishing you a Happy Chanukah; with latkes and gelt and everything peaceful and pleasing.

Most especially I wish you light…  
Light from the candles,

Light within to show you past the dark places,

Light to warm you,

Light to allow others to know you,

Light to increase your vision; know that you are cared for, you are wonderful, you are needed, you are loved.