Tag Archives: family

Year End… or a year beginning?

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artwork by Jeff Jones

As I sit in the laundry room/office of our perfect house, which became very small during the pandemic, listening to our son Cooper participating in remote learning I could take this years wrap up in so many directions. But I will spare you my musings and stick to more facts (and if you believe that, you do not know me)

I decided to put this “holiday letter” on the computer for a few reasons. First off, not everyone wants to read about our families journey so why waste the paper & secondly I removed myself from all forms of social media last November (passively… I still have the accounts, I just NEVER check them) so this is a chance to have Doreen share my thoughts for Facebook friends we have in common.

Dear Friends,
A little shy of a year ago we closed ourselves into the safety of our own, but during that time life has, not surprisingly, gone on.
Doreen launched herself into her final year at the Graduate School of Social Work at Rutgers University. Between remote learning and screwy internship options she briefly considered postponing but this is a calling and she had to answer the call. Come May of 2021 the world of Social Work may never be the same once Doreen hits it!
School has been tricky for all the learners in the house, no surprise there. Cooper has been the only kid with mostly in person learning due to the school being able to maintain 3 students per classroom and strict Covid protocol.
Olivia got her first “real boyfriend” just in time to be Rapunzeled away by Covid-19, but he spends most hours after school with us via FaceTime. It’s a remarkable study in human behavior watching teenagers mating rituals over video chat. They completely ignore one another for hours on end and then you’ll here the odd “babe” or “sweetheart”. I’m not going to claim to understand. Olivia did occasionally go off to the park this summer to “meet up” with her beau, I don’t even want to know.
Ruby has been devoted to voluntary isolation in her bedroom. It seems to perfectly align with her disenchantment at being in quarantine with Cooper and Olivia. She did manage to enjoy a week in St. Louis this summer with cousins and a pool in Uncle Mike and Aunt Mary’s back yard. We maybe had to tell her that they all were tested prior to our arrival. Sorry if that was super spreader of us, but desperate times call for desperate measures to get Ruby out of her room. (please note: thankfully no cases of covid were born from our time with family this summer).
I started off the year going on the road Stage Managing for Mandy Patinkin and Producer/friend Staci Levine in January and early February after The Illusionist, Magic of The Holiday’s closed. It has been a minute since I have toured, but taking care of Mandy’s show was a real treat. I was in St Louis with my Mom and my brother Lance when lock down began. My siblings and I were at the early stages of trying to manage long term care for our mom who’s memory has been smashed and get our brother Lance settled as he was dealing with his own health issues. I returned to New Jersey for April & May and then things went from bad to worse in St. Louis. Our brother Lance; protector of lofty dreams, possessor generous spirit, a gay knight, a man of irreverent humor and mad devotion passed away the morning of June 11th. A few of us were with him for the final hours of his journey; playing music, telling stories, singing, laughing and of course crying. I miss him more and more by the day, but I know I was lucky to have him as my big brother and a huge influence on who I am today. With Lance’s passing I spent much of the summer helping my family clean out my mom’s house and be as close as possible to my mom, my St. Louis sibs and lots of Zoom with our brother Jeff in Phoenix.
We are all certainly looking forward to the new year. 2021 has a nice ring to it. I for one have spent the fall getting fat, out of shape & uninspired so I can have some heavy hitting resolutions come January 1st… I mean, I realize that’s not how you are supposed to set resolutions but what the hell. Doreen and I are very excited about the New year and the decency and inspiration coming to a certain famous house very soon.

Since I cannot be reached on the social platforms please feel free to be in touch via: jpjones314@mac.com or 917-797-2618. Doreen can be reached on FaceBook or at doreenchila@me.com or 917-747-9359.

Me and Coop this summer

Doreen with Norman the Cat & Stella our mini dog!
Olivia with Uncle Mike and Aunt Maria
Ruby in her natural habitat… her bed!

Good Night Sweet Peter and flights of angels sing thee to thy rest!

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He knew us all as individuals when we ourselves struggled
to be a who, that had a why and sought a path to our where.
We were microscopic balls of id and ego
fighting for our place in and out of the spotlight
the spotlight he shone for us full of pink & blue.
He snatched us from our heroic young roles across the country
and had us feed together from the belly of comedy and tragedy.
The mission, a place in the pantheon of theatrical greatness
or maybe a chance to find our way without the rigor of a mold.
We were to be our own person, finding our who, what, where, when, yes and, why.

His direction, the slightest touch at the helm,
should not have made a difference in this great sea before us but it did.
Such a subtle shift in our art that you had no idea what was happening
never a lecture took place, not a lesson on a page, nor a chapter in a book.
He attached us to our greatness, knowing our weakness
but never letting us weaken ourselves.
We said we knew it all, that our situation was different, yes but,
every story was a repeat musical phrase to his ears.
Yet, he never dismissed us, he listened and watched us work it out.
He poked the bear of curiosity and made us find our own truth
be our own professor to build our own lectern.
Grow and not turn back…

One person is missing and I’m turned upside down
I can no longer connect the dots, my dots are missing
they are now millions of stars that fade in and out, too fast to identify.
One who I could rely on is missing from my greater landscape,
it’s now a fallow field missing the nutrients of my history and my present.

He was snatched away leaving our hearts struggling.
We thousands have no claim, do we?
He was a man who staked a claim,
yet he made no claim to our greatness.
His greatness was in the great amount of joy
he found as we all satisfied our curiosity.
A curiosity he understood long before we examined it.

Peter Sargent was a man who helped define me as a theatrical professional. He continued to be the man that I wanted to make proud. I wanted to give back to him, with my career, what he gave to me as a constant in my professional journey. He is gone now, unbelievably taken by death so quickly it still seems unreal.  I feel the loss more every day, there are no texts or e-mails or phone calls. No sitting side by side during Webster’s yearly pilgrimage to NYC where he deftly tells me about most of the seniors no matter their discipline. No more annual dinners where I could laugh with him, share my life with him on and off stage. I suppose if I were more evolved I could continue to make his “memory” proud as I continue my career, but honestly, I selfishly want to make him proud in person. He is not a memory to me, he is a man alive and well who help shaped me into who I am today and I miss him dearly.

http://news.webster.edu/employee/2019/peter_sargent_remembered.html

 

The journey of a train enthusiast on the spectrum of reality seperate-titus

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IMG_0810Cooper is my 13-year-old son who Lindy Hops on the Autism Spectrum. I have written about him as a child and his rabid fascination with NJ Transit, not trains but Transit trains specifically. The one thing that you should know about Cooper’s different-ability is it is wildly specific. It’s not spaghetti its spaghetti with Pomodoro sauce from Daniella Trattoria in NYC (not an ad, but could be an ad, if you are willing to pony up a few plates of pricey pasta for him). Okay, I could spend an entire story catching you up on Cooper but instead I am going to jump to the recent iteration of what we refer to as “Life With Cooper”.

Cooper’s joy the last several months is “working” the trains whenever possible. He spent time thinking he could be satisfied traveling various train lines, some of which include but are not limited to: Trenton, Montclair State University, North Jersey Coast in New Jersey. Oyster Bay & Long Beach on Long Island and countless requests for Amtrak, although to date I think he realizes that this without tickets is prohibitive. Word has it he was permitted a ride on Amtrak from Newark Penn to New York Penn one day, but I think travel outside the tri-state area will have to wait. Now if you are thinking, what irresponsible parenting letting her son ride Transit without supervision, please stop reading and return to your perfect parenting, because mine is an imperfect household filled with the perfect understanding of our shortcomings. So, Cooper “works” for Transit.

Friday night lights, filled with horns and bells
The movement beneath his solid stance feels easy.
4632 to Bay Head making stops at…

Saturday runs to and fro starting with Les and ending with Randy
The rhythm of the tracks the only steady in his brain
7695 to New York City making stops at…

Sunday is reserved for morris/essex maybe multis or commons
The traps and the doors every task he will sharpen his skills
7920 to Dover making stops at…

Cooper and I were on our own a few weeks ago while Doreen and the girls were in South Carolina. We were in a nice routine together and he took time away from his busy work schedules to be with me at the theatre or at home, so the only time he “worked” was when we were riding back and forth on the train to my work. Wednesday night we were on our way home after the show; typically Cooper isn’t on Wednesday night trains because of therapies or school, but this week was special. The rules are always the same when Cooper is with me at theatre in the evenings, he leaves the Palace early so he can find out what track our train will be on and secure the first four-seater at the front of the train, on the top left hand side specifically, for me to sit in with his skateboard and back pack while he works. He loads his pockets with schedules and maps in homage to his heroes, the conductors. A few of these conductors are super friendly to Cooper, they give him old zone maps and let him help with the traps at the train doors, they are okay with him trailing behind as they check tickets or letting him announce the stops throughout the lead train car. Cooper carries my work flashlight at night so he can wave down the platforms to the ticket takers signaling the all clear at station stops, when instructed of course. The night before, Cooper sat with one young conductor having a pretty incredible conversation about engines, equipment, schedules and the recent cancelations. It was a really friendly conversation that made my heart full and proud. I guess you might say it was a parental high to hear your son, who doesn’t always know how to conduct himself in conversation, really engaged. On this particular Wednesday night I was in my seat early so I got to hear his exchanges with familiar people (and some not familiar) as they boarded the train. These were far more typical of Cooper’s interactions; some of the guys would ask, “how many stops to Orange?” and Cooper would quickly rattle off a response which includes what zone that stop is. Somebody got on asking if the train stopped in Newark Penn to which Cooper replied, “No, you need to get off this train and go to track 7 I believe that is where the train to Trenton is. This train doesn’t go there.” A lady across the aisle smiles at me as she hears men board the train with greetings of, “hi ya Coop?”, “how’s it going tonight Cooper?” Cooper will assume a voice of a conductor he spends a lot of time with, “how’s it going? Very good, very good.” Pretty typical stuff. This Wednesday  was a pretty crowded train so I was sharing my four seater suite with a few commoners that didn’t realize that I was train royalty because of my association to Cooper.

We were about 15 minutes into our journey, having just left Secaucus Junction, when I hear the actual conductor talking, he is one of the grumpier fellas, but I cannot make out what he is saying. A few minutes later Cooper appears in front of me, his brow furrowed in distress. “Can you come with me please?” He says in a low sweet voice. Knowing that this is serious I grab all my wares and Cooper’s skateboard and backpack and as I head back to the rear of the car after Cooper I continue to hear the conductor talking to someone. I punch through the door into the train’s vestibule where Cooper is standing on a trap looking out the window with his head low. I said softly, “did you get in trouble buster?” and he turned to me crying, lowered his head on my shoulder and said, “he took my maps, he said they were Transit property and I wasn’t allowed to have them.” I said, “Did you explain that you had been given them Buster?” The tears were coming harder when he said, “I want them back.” I was in a parenting pickle, I wanted to march up to the conductor and give him an ear full, but frankly the way Cooper processes information I didn’t want him seeing me barking at a conductor as a solution. I continued to comfort him and said, “Buster, obviously he doesn’t think you should have them and that they are Transit’s property. Do you want to go ride in the back of the train?” “No, I want to get off at Broad Street and Lyft home.” I hugged him harder and said that wasn’t going to happen, but we could sit in a different car. Suddenly the door opened behind me and it was the conductor he sees me and hands me the maps saying, “I didn’t realize you were on the train,” he recognized me, “here I’m giving these back to you.” He says handing me the maps, “but he shouldn’t have them, so he should put them away.” He went on to say, “I had my bag stolen so I saw those maps and you know it set me off.” I calmly said, “he was given those maps sir, he didn’t steal them.” “Oh, I know” he responds quickly, “it’s just there is another kid who walks around on these trains and he’s really crazy.” Referring to another kid that I see Cooper with who is also clearly on the spectrum. He then says, “come on now, stop crying, big men don’t cry. Stop.” Now I actually want to punch him, not only has he referred to a kid as crazy but he is now shaming my son for being upset. I can tell Cooper is trying to stop, wiping his eyes and nose on my shoulder so instead of letting loose on the conductor I say to Cooper, “Did you hear that Buster, he had his bag stolen and so he got mad when he saw your maps thinking they might have been his.” That ended the exchange and Cooper and I went to sit at the end of the car on benches until we got home. As we left the train a fellow theatre commuter, a musician, asks if Cooper is okay and said to me he tried to reason with the conductor about what a good kid Cooper is and how he loves the trains, but he wouldn’t listen. Cooper was quiet when we got home, he just wanted a bath and an ice pack and went to bed. His spirit was broken. I had no idea if I had done the right thing as a parent, I mean should I have said to the conductor; you know what, fuck you and your big man bull shit, he’s my son and he can cry if he wants to because you were a dick and took away his maps. Furthermore, if you had an aware bone in your fuckin’ body you would know that he is autistic and not “crazy” you douche bag… But I didn’t say any of that, I just didn’t want Cooper to think anger is the way to deal with problems.

This incident had me a little shaken the next day, I further advised Cooper to keep his maps low unless he knew the conductor was a friend. I also reminded him that the conductor from last night wasn’t bad he was just upset about his bag. I considered having Coop take a train break but that’s like suggesting a bull dozer go easy. So Friday that week off Cooper went on a journey while I was at work. Within a few hours he was calling me to report that his conductor buddy Randy had given him an up to date zone map for the Morris Essex line and he was thinking maybe he should give it to the conductor from the other night who had his bag stolen so he could replace his missing maps…

I think that’s my son displaying empathy or ready to show that conductor who was the real “big man”. Maybe, just maybe it was a parenting win after all.

An incomplete thought

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I am my mother’s daughter
I am my fathers DNA
they both are fading quickly as I grow stronger
still becoming who I want to be.

I am distracted by the dream that my father could one day be proud
of the seed he planted, but lessons were the nutrients and my repellent.
I don’t know who he is, maybe I never did
he has not been punished as I though would be.
I danced with the belief that his actions would see him pay
in the lonely well of spirit lost but he has been saved by a fog of past lost
He will never reflect on the pain he caused
He will never wonder why I didn’t come around
I guess the joke is on me all these years later as I stare into the eyes
of a man who does not know that he created me.
Tortured me with false attachments.
I will never be you Dad. I will never strive for tidy solutions
problems that just disappear.

I am messy, I am my Mother’s Daughter.
I feel too much, I complicate my own decisions.
My problems help define my days as I try to find solutions that may not exist.
I dream in leagues so deep no ocean can contain.
I love so hard that hurt is inevitable and yet I will love again and again.

I found this draft today, one week after my Dad’s death, one week before his birthday. I am not sure why I didn’t revisit it until today and it is too late to work it into a coherent piece of writing, but for me its perfectly unresolved. My mom, while thankfully still alive and healthy, will never be the person she was, the years of stress have taken their toll. She has been stripped of her short term memory and with that comes no new long term memories. So she will never know what my kids are becoming, what I dream for their future. So it looks like its up to me to flip this narrative, to strike out on my own. I need to no longer look for parental approval, but know instead that I have the heart and soul that my parents gave me, for better or worse, and use it to make sure my children never need to feel regret over opportunity lost on my watch.  Its a pretty big goal… here goes nothing.

 

Oh Jesuit, my Jesuit! (a Sunday night story)

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As a kid I played at the feet of Jesuits. Not in some creepy “show me on the doll where he touched you” sort of way, I literally played at their feet under our dining room table; tying together shoe laces, tapping on their legs and hiding as they peered under the table pretending not to know what just tapped them. I guess these fellas, along with my two queer brothers and one slightly napoleonic brother, were my male role models growing up. Oh brother, I can here the jokes on the rolling in. I grew up in middle class suburban America without a single right to. I was the youngest of seven children being raised by a single, very freakin’ hard working, mom. The early 70’s, this was no joke; we are talking bra burning feminism, parents without partners mixers, Divine’s Pink Flamingos,  Vatican II had given permission for winners like The Flying Nun and Change Of Habit, Tricky Dick was the president (for a minute) and here I was doing Sunday night hangs with the Jesuits from St. Louis University. Okay, in all fairness I wasn’t hanging with the good fathers, I was more an observer. That was really the 70’s for me in general…, but that’s not the story I am telling right now. Right now I am talking about a group of righteous cats that could bend the opinion of even the biggest Roman Catholic skeptic; these were good dudes. I might be a practicing catholic to this day if I still had these guys in my life… mmmm, yep, I’ll leave it there. I am not going to pretend to be able to give you some enlightened description of the history of Jesuits but I think its important to note that this particular order of religious live in community and took the vows of poverty, chastity and obedience and they are heavily focused in education. I know, “duh, they are priest of course they take vows.” Not so my friends, there are other boys out there that just make “promises” to do these things not vows, these guys are diocesan priests. These are the guys that are at most of your parishes and they can own shit, make some coin here and there, maybe a vacation, maybe keep company with a little someone special because its a promise, not a vow. Now, I could go a little deeper to say that this is why this current Pope, Mr Francis is so different and seems to really be about people and love, and not just church rhetoric, because he is a Jesuit and the first freakin Jesuit to ever be the pope out of 266 of those bad boys who have worn the papal ring. Yes, the major bullshit still exists… the church is NOT like, “come our dyke sister with your lover and your children and feel God’s unbiased love.” but I kinda feel like old Francis would say that on the  QT and really mean it. Trying to be really accepting and non judgmental in the Catholic church hierarchy must be like trying to be a black president in the USA. Pretty lonely!

Whew, did I get off topic or what… So, my mom would send my brother Lance or Mike down to the Jesuit housing at St. Louis University Sunday late afternoon and he would bring back a car load of these men in black to break bread with my mom, my sibs that were around and me. There was usually a big pot of spaghetti sauce which is sort of my families version of the fishes and the loaves… a little ground meat went a long way when mixed with cans of tomato sauce and paste. Wine and laughter were typically a part of the meal. After dinner there was a lot of conversation & pipe smoke. Father Jim, who was our Sunday regular, loved a pipe. I mentioned before that my mom was a single mother. My old man did not die, my parents were divorced, yep the big evil D-word. Not a popular thing in the late 60’s and even less favored by the catholic church without an annulment. Which I am never clear why my mom didn’t get an annulment cause its not like she was all boss and said, “you know what Hal go find yourself a waitress at a diner in Perryville MO and take up with her and leave me and your seven damn kids to fend for ourselves.” Granted, I was only 6-months old so I don’t remember anything but I’m pretty fucking sure that is not how it went down. So my non-annulled mother who could no longer receive communion when she went to church EVERY Sunday and holy day of obligation would make special Sunday night’s for a bunch of priests. Maybe it was because the leader of the pack, Father Jim Burke, was a tremendously bright light who would speak intelligently and lovingly in our home. He was respectful of the job my mom was doing, along with the help of my older siblings, in keeping our family together. Now, I don’t think Father Jim or any of his brothers of the cloth that visited were naive, nope not at all. I have two queer brothers (at the time I was merely an adorable tomboy), one, my brother Lance, very outspoken and warm the other, Jeff, who is an artist was probably just out smoking pot and avoiding any conflict possible particularly involving his sexuality, my eldest sister, Deb, who was cut out of the bloom of the love that permeated the late 60’s early 70’s. Another brother, Mike, who played the obedient boy to the letter but was in fact the biggest & funniest con-artist on the pot smoking planet. A sister, Judy,who was plagued by her off color family and I’m convinced to this day has memory loss in order to not suffer the embarrassment of our eccentricities and last but not least my sister Tracy, the stunning looking athletic girl who would make sure things went how she had them planned. So with this wonderful and oversized family all in one house, Father Jim and company would come to our home to  laugh, listen and discuss life, art, science, philosophy or whatever for hours on end before saying goodnight and tumbling back into our Dodge Dart Swinger to be deposited back at their housing. Our own little 27 rue de Fleurus right there at 7920 Colonel Dent Drive.

To this day on my mom’s kitchen window sill you can still see a photograph of Father Jim that accompanies his obituary, that twinkle in his eyes that gave everyone permission to be happy around him. Father Jim was a Jesuit so he went were his order sent him which was Spokane Washington for the later part of his life. My mom did get to see him in Spokane and indeed he spread no less of his love and teaching there than he bestowed upon our band of merry misfits at 7920. My mom was once told she led a “charmed life” by a boss of hers. Now to know my Mom’s story that statement is debatable at various times but there was something charmed that brought all of those thinkers into our home and share so much love on those Sunday nights. Perhaps, if I care to let myself indulge in that love, this is why are family stayed so bonded in our differences and healthy through some tricky times.

Bipolar: There is nothing righter than the disease

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You may never find the peace you strive for
although you search perusing the many possibilities that can get you there.
Then there is a crack and pieces of peace cover the ground
but not the piece of the peaceful mind
just that piece of glass that cuts into your skin asking for peace.

Your beautiful mind is in pieces spread across the universe
A shining of a star flaring too soon, a soul lost in space and time.
Your beauty flows swiftly and pools, your beauty, your blood
your mind swims lightly in a sense of peace.
The sun reflecting but not off your once bright eyes mind and spirit
Just off of your blood lost.

There is a glimmer of hope that steadies you as you go deeper
into this magical place where the release of inhibitions seem to come so easily
and all at once you are hoping that feeling will not end.
You don’t know who is controlling what or when what is controlling you
but you don’t care the who or what as the heat rises to the top of your
at last peace, some kind of peace.
But as the heat subsides and cool air rushes in you see you are left alone
but you can’t possibly be alone, you had peace, where is it now?
Maybe you are alone. Could you be alone?

You may never find the peace that you strive for, for it may not exist.
But pick up those pieces baby and see if they don’t just go back together
in a different way to create a new beautiful piece giving you the peace you so deserve.

Love,
Mommy

My daughter suffers alone with her bi-polar, with only her guides; her demons that tell her “right” from “wrong”. Trust me, her mom and I try to help. I pray prayers to rival the Pope; I fully expect white smoke to fly at any minute. Here’s the thing with mental illness that I am just beginning to understand. There is nothing righter than that disease in the moment. Bi-Polar is the powerful cunt that holds all of the cards. I adore my angel. From the minute that little baby girl was placed in my arms at the hospital I was hooked but there are more days than not that I have no idea who she is. I keep telling myself that puberty is upping the stakes, if her mom and I can keep her alive through this maybe with proper continued treatment she’ll be okay… I hate the word okay. I want her to be better than okay. I want that brilliant light to shine as she goes through life. God has delivered an Angel who must fight incredible demons every day and one day she will triumph and wake up with peace. I hope.

Getting on with a day, joke by joke

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I can jump up and down on a ball while juggling knives and telling jokes! ..Nope, not at all. Unless, bare with me on this, the ball I balance on is my career and my home life very well rounded and somewhat hard and very springy and often unpredictable in joyous ways. The daggers I toss in the air are the bi-polar manias of my incredibly talented and sweet natured pre-teen daughter who is super sick with a disease that most of us choose not to try to understand. The son who chooses only to listen to me and even then the term “listening” is a stretch, oh and he thinks we are wealthy. The youngest daughter who doesn’t say much but is full of experience at the ripe old age of nine thanks to her siblings and their oil & water personalities fueled by developmental delays and mental illness. The jokes I tell while jumping and juggling are real, I tell jokes all the time. Jokes to get by, jokes to let people know I’m listening, jokes to make everything okay in the heat of the moment, jokes to feel better, jokes to lift up, jokes that self deprecate, jokes to break the ice. So many jokes. I tell them to myself all day long, hilarious observations that will just die in my stunning memory. I have my buddy Matt who is my steady, my best friend outside my family, who goes down this darkened path of inappropriate humor with me. I cannot describe our relationship very well but to say when I’m not with him regularly I feel less whole. He is the man who makes my juggling seem bearable. I can tell him about the most horrific events that transpire and he’ll help me move on for the minute, hour, day. He’ll turn the worst possible situation into a reason to laugh and trust me when I say he has been put to the test over our nearly twenty year friendship.

I guess a good laugh isn’t always the best option, I know some people are heavily invested in the hearty cry and when I fall off  my ball and a knive stabs me right in the heart I can roar like a wounded animal with water works that match. This is not my favorite road to take because then I end up exhausted and listening to The Carpenters as a result of hitting this emotional rock bottom.  Then I have to start the process of cycling up musically, maybe next is James Taylor, perhaps Joni Mitchell, then early Springstein from there I can go in a variety of directions but it can be a long process of minor keys.

There’s also getting really angry and needing to give a good physical reaction to release. These were far more common responses for me years past and kinda dangerous roads for me to go down cause I’m pretty strong and my temper can get a little over the top. Then I feel huge waves of regret and occasionally have repairs to tend to. These huge waves of regret can also lead to The Carpenters which puts me in the above mentioned exhaustive cycle.

So I think its safe to say that the inappropriate monologue of humor that runs through my brain as an endless loop and slips out into the open maybe too often is my best course of action.

The face of the incredible invisible girl, Ruby!

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DSC_0056I have a little girl who is a little bit untamed and honestly I like it that way. She has an odd mix of freedom accompanied by a wicked sense of familial spirit. If you imagined a child who grew up in the trees in a loving pack, with with her braids tossing about as she dances happily in the sun that child would be my Ruby; but instead of trees she is growing up in a Dutch Colonial dancing happily to whatever tune she is moved by at the moment, real or imagined.

Ruby is seven years old and fights to not be completely dominated over by an older sister & brother who’s needs often seem bigger than life itself. Depending on the day she is video worthy with her ten year old brother or partaking in elaborate Barbie sessions with her eleven year old sister. She’ll never pass up a bike journey, although prefers it include another of her siblings. She loves for me to pick her up and hold her in my arms, an act that is not so easy given her solid frame and height, but something I will do until my body can no longer bear the load. Her preferred lounge ware is a pair of leggings and maybe a bracelet, but that’s it… no shirt required for comfort. She is stubborn to the point that it seems she will never conform to the usual standard practice of dress and diet, but I’m not sure she should. Don’t get me wrong, I would give my left knuckle if Ruby would get dressed without a fight in the morning, brush her teeth and go to the bathroom without an escort but this reality is it is part of her whole package.

Ruby enters a wonderful world of secret passage ways whenever she wants. She’ll make elaborate gifts with letters for her teachers and then never deliver them, but never wants them revealed from their packaging. She will disappear under a cover to play on the i-pad but its not just to be alone, she enters another time, another zone that allows her to block off fire breathing dragons that take the form of her sister Olivia or slip by unnoticed with a heard of Rhinos charging across the jungle floor or as we lovingly refer to him as Cooper. She lives a life under the cloak of that quilt that unfolds without apology or abandon. She pulls her mom and I aside in the most private way but causes a public uproar if we need to depart this covenant. She wants no attention but refuses to go unnoticed. The colors of her spirit are amorphous; the pink of a young girl mixed with rogue mixes of deep purples and bursts of orange. You never know what Ruby you’ll encounter but trust me they are all pure Ruby.

We play our game of twister with Ruby. Manipulating our plans to try to make her feel special but not noticed. We really have no idea where this labyrinth will end. She gives us no clues and almost taunts us with the idea that we may figure her out one day. She has no noticeable agenda but is full of powerful mysteries that God gave her at birth. Mysteries that we watch with equal part horror and love. Her name is Ruby Jones and she truly is one of a kind.

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Acceptance

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This blog strikes close to home. While our son Cooper is “high functioning”, a diagnosis we are grateful for, we have been through the diner wars and The Mapleleaf Diner in our home town has not only been a safe space as a training ground for Cooper but he has also become a favorite diner there. We are far from out of the woods, just this last week while Cooper and I, accompanied by his sisters, went on a regular train trip Cooper became agitated by his lack of ability to control the situation and expressed himself too loud & a train customer decided to scold him as he disembarked the train. It took several hours to pull Cooper back together that day and the next train trip will be a tense one for me since I was never able to pinpoint his agitation that day.
I am grateful people are growing in their understanding of this disease, but I am even more grateful for people, including my friend Claire who wrote this original blog, to the people advocating for this puzzling disease.

A Project for Kindness

autism

When I began this blog nearly two years ago, it was with the intention of spreading kindness and sharing good news stories.  That has changed a bit, but I still like to share things I read about or see – I have been using my “Random Kindness Tour” button on my site, where I share videos or stories I find on the internet.  I have added a lot of them there.  Once in awhile though, something is shared with me that I want others to see and spread as well.

Today, a friend from college shared this link.  She has an autistic daughter and she is her biggest advocate.  I have learned so much about autism from her.  My nephew is “on the autism spectrum” as well.  This “What Would You Do?” story sheds some light onto the daily struggles families dealing with autism go through on a…

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Bi-polar-coaster… not a free ride

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I am not a mental health professional. I am not a professional writer who has done extensive research on my subjects. I am a mother of three who, with my partner, is doing my best to raise our brood. My daughter Olivia suffers with Bi-Polar disorder. It’s a real disease for all of you skeptics out there who think it’s nothing some firm Midwestern parenting couldn’t handle. In fact several times over the last year my little girl has been in such a manic state that it could not be controlled, even by this skeptic who believes that there’s nothing good Midwestern parenting can’t handle. Let me tell you a little bit about Olivia, she was born eleven years ago to a mother who suffers from this same disease but choose to self-medicate before, during and after childbirth. I understand the desire to self medicate when your options for psychiatric care are outrageously costly private care or overburdened state run facilities. So, my angel came to us under what some may consider less than desirable circumstances. When she was an infant I would look deep in her eyes and I would see a hundred years of living deep in those beautiful dark brown eyes. Olivia is a well mannered, intelligent girl (albeit sufficiently lacking in common sense) with a wonderful imagination, a few good friends and a good sense of humor. Her only draw back is the rage that rips through her entire body and has done so from the ripe old age of three years of age. This rage presents itself at home mostly and would caused this little girl to loose all control scratching herself bloody and hating herself and being alive. Once again I took on the parenting deficient role and tried my level headed best to get her to “control herself”. Fortunately, I have Doreen as a partner, who started dealing with the medical end of this right away. In my defense I did take her to a few alternative healers who seemed to be interested in dealing with her allergies, which were and continue to be extensive, but they weren’t able to hone in on my baby’s wiring. So fast forward several years to a fourth grader who’s disease starts presenting itself in school. The at home behavior now includes voices telling her what to do (often resulting on inflicting pain on her two siblings) and raging and school refusal that has resulted in home schooling and her attendance in an outpatient program that provides daily counseling, group therapy and med management. It was quite a year that involved several trips to the emergency room to seek help from crisis counselors and finding what combination of meds would help us keep ahead of this disease. The disease was relentless in Olivia’s pre-teen body and with natural pre-pubecent chemistry changes. The future looked impossible and scary.

Just last week Olivia turned eleven years old. She took cupcakes in for her 5th grade classmates, last night she had a sleep over with a few close friends. She has an amazing group of teachers that are working with us to see that she gets the most out of Fifth grade in order to prep her for middle school. Doreen continues to be a driving force in keeping her treatment in order. We no longer look at the long ball with Olivia, we look to the day to day and thank God that we can do that when so many people have lost precious people young and old to this disease and so many undetected mental illnesses. My daily lack of understanding about what is best for my angel is overwhelming, but I know one thing for sure, I am devoted to seeing her taken care of one day at a time.