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Leave a comment Posted on January 2, 2017January 2, 2017 autism, Uncategorized

Adam is 17.

Dear Adam,

This blog entry starts with a long,deep breath and the blinking away of a few tears. Maternal emotion is at play as I reflect upon you, my son, my dear Adam, as you turn 17 today. The overused saying of mine “Didn’t I just have you?” swims in my head as I write this and I am trying not to say it, as I know it provokes the usual eye roll from you and your brother, but I really don’t know where time has gone when I look at you guys. I hope your childhood was long enough and filled with all the love, innocence, wonder and fantasy that all children deserve. I hope your memories make you smile more than they do not and with the not so good ones that were our fault, as your parents, know that we are sorry, we hope you recognize we are merely humans and forgive us.

Disney-2011 and 2013

I know you are not able to focus on my wordy entry but I know you will read some of it and look at the photos and recognize the music in the videos and one day someone may read it to you or you might even find the time later on in your life to read this long after I’m gone. This is my medium and much like your music and art and sports, this is how I express myself best and I had to write this for you because I believe it is important to let people know how you feel about them. You know, like that John Mayer song we would listen to. “Say“.

Looking at the photos of you over the years was my inspiration for this piece. I have 17 years of fantastic photos of you, Adam, and I remember everything about the day each of them was taken. One can never pinpoint the moment you go from being a new born baby,

Baby Adam

to this person,

Adam the kid

to this happy guy,

How much and how quickly they grow and change

all the way to being the young man who towers above me today. But what I do know, is that it has been my great honor and privilege to witness it all. Your journey was and to an extent still is a difficult one. It is not without it’s hiccups, challenges and frustrations and in our case worry and frayed nerves but you have handled it by trusting in my 50/50 promise.

Under the smiles, sometimes there was worry.

When you were 5 years old, and I was trying to make sense of our family – trying desperately to hold on to all of us as we rode this tidal wave of autism, I promised you that we would come into your world and meet you half way, if you took our hand and came half way into ours. Thanks, Adam, for meeting us head on with courage, trust and determination. People commend us for parenting you but we certainly could not have done any of it if you, my dear boy, were not a willing partner. I told myself if you were happiest staying exclusively in your world, I would find a way to accept and be happy with your choice, but intuition, stubbornness and I’d like to think love, encouraged you to let me, Daddy and Logan into your life and I am ever so grateful you trusted us

and thought us worthy of your curiosity and time. Thank you for teaching us even more than we taught you. By letting us in, you learned that all we wanted was for you to be happy and to include you in our family. Your dad didn’t care about the things anyone said you couldn’t do, he just wanted to give you and Logan a joyful, happy life and he strives to make your lives happy and special every day. I am sure we can all agree that Dad really knows how to make everything fun and you boys are lucky and blessed to be able to call him your father.

Great Wolf Dad

I used to believe and say “Adam can beat autism”. I have never been happier to be wrong and cast such a foolish thought aside. I know now that there is nothing to beat. I no longer wish this condition was not a part of our lives. I no longer wish it could leave you because without it you would not be the

elite athlete, artist or musician you have become. Our normal would be much like everyone else’s I suppose and we would be quite mainstream and ordinary. Now that I think about it, none of us in this family is meant to blend in, so in a weird way, your autism has made our lives perfect. If you did not have autism, you might have been ill with some horrible disease or maybe you would have been involved in some dangerous things, I have no idea. But here you are, different, special, talented and perfectly peculiar.

Adam’s Art

The Natural – Never had a lesson – Oh, SO good!

Whenever we took you to speech therapy at the Children’s Hospital in Alberta, your Dad would say, “Look on the bright side, we get to walk past Oncology”. My point (and his) is everyone, every family has something – some struggle, some issue to overcome or live with and your autism, while a challenge for you and for us, has made us better people. It has also made us very tired. worn down and frazzled people at times, but at the end of each day, we are better for it because you are worth it. Your autism has allowed us to meet many fabulous people and has allowed us to see the true colours of others. It has forced Dad, Logan and me to think harder and be more creative, patient and flexible when trying to include you in our world.

Stacked

“Just Dance” with Dad

I know there were times we got it terribly wrong. I know we (especially me) are hopelessly flawed. I know I have not been the best mother to you sometimes and that I let anger, grief and frustration get the better of me but the one amazing thing that always helped me do better by you (and Logan) is that forgiving, welcoming and loving piece of you that not even the autism can hide. You make me try harder at being the mother I need to be and can be for you guys and I think if you were not autistic I might have taken a lot for granted and we all may have missed out on the great things we get to experience through you.

So Adam, I hope you enjoy this photo story of your life. From the moment you cried your first cry and stopped at the sound of your father’s voice and took his finger, to the first time I looked at you and held you, I knew you would take us down a path like no other. You were alert and strong and ever so calm and even when the storm of autism rolled into our lives, there was something about you that spoke to every instinct I had that urged me never to give up, never settle and to always challenge you and push you and me for more. It was what you needed as much as what I wanted and it is because of that drive we both possess, we are able to snub those who doubt your abilities, those afraid of your autism and who have let their hang ups and fear get in the way of them getting to know the unique and wonderful person you are. Adam, you have shown time and again there is nothing you can’t do and I urge you to keep tasting the sweetness of this world. Go for things head on as you always do and embrace the joyful feeling of accomplishment. You are astonishing and impressive, my son and I know you always will be.

You have worked so hard at living and dealing with life everyday that you have been and will continue to be successful. Thanks for your kind of cool …

Our unique, quirky and cool Adam

for trusting us and trying all sorts of new and sometimes scary things …

for loving the beach, the waves and having no problem getting sandy and gross … Thank you for being open to learning how you can lend a helping hand.

Adam helping out with chores

Thanks for showing me Grandad Barsotti lives in you by honing in on that gene that allows you to sit and relax in true Trini/Barsotti style.

Now this is a Great Grandad and Grandad and Great Uncle Frank Barsotti sit. Truly relaxed and ahhhh,,,

Thanks for coming out of your comfort zone and fostering friendships and reaching milestones and going through rites of passage you didn’t have to, but showed us that you could.

Adam’s confirmation

We’ve see you through the retainer and the acne and we still suffer through your teen behavior and moods (although less so lately), trying to figure you out the best we can. Thank you for learning how to control your emotions and understanding that we are really trying to help you through the difficult times. Thank you for being open to Grampa teaching you how to drive the boat and the 4-wheelers and for understanding and accepting that while you drive them very well, unlike many teens, it is not possible for you to drive a car.

Thank you for your zen, your great personal taste and love of food …

Only Adam will order a veggie burger with bacon.

Thank you for getting to know and loving your brother and for stepping up and being his big brother whenever you could …

Thanks for the moments where you remind us that you are “in there” and at the end of the day, you are just another teenager rockin’ out at a concert.

Adam at The Script Concert in Toronto

Thank you for teaching us how to see life through your eyes … for showing us how to take the time to see the details we so often miss. Thanks for dipping your toe, then your foot then jumping into the tumultuous waters of this bizarre world of ours and for letting us enjoy the quirky, alternate world that is yours. Autism makes you, you and it’s okay to dive in there and hang out in it to connect to who you are. Don’t let anyone ever stop you from submerging yourself into your world to comfort and take care of yourself. We are blessed to have you. And anyone who meets you, should be honoured if they get the opportunity to get to know you. You matter to us and the world needs you just as you are. As we have promised to enter your world, I only ask that you continue doing us the kindness of coming out of it and joining us as much as you do now because we enjoy you and love having you in our world. We love your smile. We love your laugh.

We love you. You make our world complete.

Someday, Dad and I will be gone. Where there is birth, there is death and that is why it is so important to live as much life as you can in between. For the days when we are no longer here and you find yourself feeling not so great and maybe a little lost or unsure, remember you are loved. And remember you have Logan. From the womb to tomb, as your mother, I will always love you, the way only a mother can understand. Remember to listen to that tell tale song I would play in your room in Montreal when you were little – “Candle on the Water” beautifully sung by Helen Reddy from the original movie “Petes Dragon“.

I never knew why I needed to pick you up and hold you tight as often as I did and dance around the room with you to a song that had such tear provoking lyrics. Lyrics that speak of someone lost who needs a help…needs a life line. It seems that way before your diagnosis, way before there was anything to be suspicious of, this song made me acutely aware that you would need something more from me. That you would need me to dig deep and fight and advocate for you. Like this song was on that favourite CD of ours like an omen. I knew it then and I know if you listen to this song anytime when I am no longer here, it will remind you that you are never alone and you will feel the comfort and love you seek.

Happy birthday 17 year old. Just like in this other old favourite of ours,

I think I can safely say I am not worried about your future any longer because my boy things did get easier. Things did get brighter and dare I say we got it all done.

Love you forever. So proud and in awe of you. ~ Mom.

Leave a comment Posted on December 25, 2016December 25, 2016 Uncategorized

Let’s Fix Christmas

This year, more than any other I have been noticing people tweeting and posting on Facebook the importance of remembering people for whom this time of year is difficult. The posts focused on those who are lonely whether surrounded by people or not and those who simply are suffering inside, in silence from depression. There were posts that begged for re-posts or requests for people to simply say” I’m here” or “I’m listening” and the thing that struck me the most was that this was a worldwide plea. I have friends in Germany, England, the US, Canada and even in my sunny, happy to fete at Christmas, isle of Trinidad, (where I remember the best Christmases of my life) pleading for people to reach out to others across the miles and over the internet to clasp proverbial hands and hold on tight to each other so we can all make it through the holidays and safely into 2017.

This disturbed me greatly. Christmas is the one time of year I could always count on to bring us all together. Christmas is supposed to create that warm, loving feeling within all of us and give us renewed connections and most importantly, give us hope. Yet, here we are urging one another to hold on to each other tight because something is so very wrong this time of year for so many.

I love Christmas and yet I too, over the past few years have been feeling that it has become overdone, frivolous and by the time Christmas Eve comes around, a little stale. I have become so sick of the talk shows and their “12 Days of Christmas Giveaways” and all the ways we can eat and still stay thin over the holidays and how to impress the guests at your holiday home soiree and all the shows radiating the pseudo importance of all the material shit that has been shoved down our throats since Oprah wanted us to have all she deemed worthy to be her favourite things. We have been choking on all of it since television became 100% sensational and we have been dying from the overdose of “must haves” that have been instagramed, messaged, Facebooked, pinned, tweeted or tagged to us in the past decade. Yet so many people are too hooked to turn a blind eye to it all and what it’s doing to their lives.

When my husband came upstairs, I mentioned what I was writing and he made a valid point. People have gone from anticipating the magic and wonder of the season, to expecting things and or hoping to be impressive. Whether it is a thing, a feeling, a person, at some point the purity, wonder, magic and holiness of Christmas slipped away when people started to get what they wanted year after year. People started wanting more and when what they had was no longer enough, the bar was raised a little higher and now it is too high. Many people cannot keep up with themselves. Christmas is becoming less about what we can do for someone else humbly or what we can give to someone to make their Christmas better and now instead of fewer of us in need, there are more of us in want and no matter how much we get, something is missing and what is missing is the true meaning of Christmas, it’s religious significance and simple humanity (all these ideas and observations from my guy who is not a religious person). Take away the hype and the material stuff and that warmth and glow we seek will re-appear. People will be fulfilled again. We can start fixing it now. Start with ourselves and our children.

Many of us have something good we associate with Christmas. Maybe it is an aroma, like that of a favourite dish or the smell of a real tree. For some of us it is a sight or a sound, an ornament, church or a story a parent or grand parent would tell us about their Christmas.

A good memory could be of a card we saw on a mantle,, singing carols by a creche … whatever it was, something made us feel good.

Rich or poor, most people have something they remember about Christmas that makes them smile. The more Tom and I talked about Christmas when we were kids, we noticed our story was the same even though we grew up in two completely different countries and cultures. His was snowy and white, the way it was projected throughout toe world and mine was hot and green and rich in a culturally diverse tradition but we both woke up way too early, filled with the same excitement with the same innocence of childhood and that wonderful feeling and longing that came about because of this wondrous time. What happened? Did he come? Did I get a gift? – all questions that stir up the essence of Christmas morning.

As we grow up and fantasy becomes reality, it changes, but it shouldn’t mean we have to lose the essence of Christmas. As a father, Tom still loves seeing what happens on Christmas morning when we get that reaction out of Logan and Adam when they see we actually listened during the year to what they liked and we were able to get it or at least come close to getting it, especially with our autistic son Adam as in his childhood he was so hard to figure out sometimes. Over the years we have watched Adam smile and Logan get so excited he could hardly put a sentence together when they saw the tell tale cookie crumbs and empty milk glass – clear evidence that Santa stopped by. The reaction has become “cooler” now – broad grins, high fives and tight hugs having replaced the jumping up and down and squealing.

In addition to the Christmas morning reaction,as a mother, it is about taking in who and what Tom and I have created and loving them so much and taking care of them everyday, teaching them, guiding them, helping them in any way we can …all that we do during the year as a family coming to a crescendo on Christmas morning because no matter what happened all year, good or bad, ease or struggle, we made it, we are together and we are healthy and happy and so grateful for who we are and whatever we share. It is about making Logan that pumpkin pie he loves so much and the garlic butter party mix snack Adam looks forward to every Christmas Eve. It’s about baking our un-decorated, very plain looking yet tasty cookies, or Tom making that chocolate cake with red and green sprinkles. It’s about having whomever of my close friends (of various nationalities and religions) over to our house the week before Christmas, excited to cook for them and serve the sorrel I was able to make because I just happened to be in Pickering and was able to stop by the West Indian grocery one night. It’s about hearing mummy talking excitedly about making pastelles and remembering how she, Reina and I would talk into the wee hours of the morning, tipsy from the scotch Dad would serve us whenever he woke from dozing on the couch in the living room. As a sister, Christmas is about making my sister her favourite cherry pie and receiving her home made cranberry pear preserves. Its about Tom bringing the garlic bread and me bringing the roast to their house and about the young children in our family and getting them a special present I know they will love. It’s about watching Logan and Adam devour my stuffing and sipping a drink next to my husband on Christmas Eve night, grateful that we spent yet another one together, toasting the ones who are unfortunately gone but not forgotten. Christmas is about mass and the celebration of the birth of Jesus Christa

and what that means to me and I think it is unfortunate the re-enaction of the three wise men’s gift giving got out of control or as we say in Trinidad, “gone haywire”.

We live in a time when we can get anything and everything in person or on line. Black Friday and Boxing Day sales have gone from a day to a week. Perhaps it is this drive for the material that makes us obnoxious and unsatisfied, You see it in the people who love to let you know what they drive or “who” they wear and they don’t even realize they are showing off. I’m not saying you should not buy what you want or treat yourself to something you think you deserve. Just do what you do in moderation, have some tact and don’t show off. When you die, your body will decay and like everyone you will become just dust. Your clothes will be donated (hopefully) for someone else to wear and they would not have paid what you paid for it and your car will be driven by someone else and hopefully in spite of your possessions you will be remembered for what you did while you were on the planet and the manner in which you lived your life. What people don’t blatantly know about you; the stuff they just happen to find out is much cooler than when you brag about your possessions. Humility is far more admirable than flaunting. Our children are spoiled and so are we and as we tend to do with so many things, Christmas is dying by our hands. So, (big sigh) as I type this and can hear my husband’s Christmas music playing in the basement as he prepares to stuff the kids stockings – I am going to do my part to fix Christmas and I am going to start with my little family and friends. And I urge all of you, especially the ones who reached out on social media to do the same.

Let us think about what we can do to change Christmas and make it what it used to be. What can we do for someone or make for them that will put a smile on their face. Let’s spend more time and less money. Spread more joy, laughter, ole talk as we Trini’s say, and peace. Let’s enjoy the food and resolve to work it off later. Let’s share the food we have with those who have little to none. Let’s listen more and offer words of support to help lessen another’s pain. Let’s teach our children to do the same. Let’s boost the importance of family and friendship and keep the magic of the season alive for little ones. Let’s make memories about whom we share the season with and not about what gift we gave or got. Let’s keep a part of the season quiet, humble and exclusive to your household and let us take the time to remember what Christmas is. Let’s remember generosity and kindness and let us be thankful that we were able to take it all in yet another year. Let us live out the season in love and let’s turn our backs to the media that pull us in all the wrong directions. Let’s take a good look at what we do have and what we stand to lose and find ways to be grateful for our blessings – for every breath, every sunrise and for every day that ends with the ones we love, still a part of our world. Let’s send out our greetings and well wishes and go off line for at least one day. Let’s take Christmas back. Let’s fix it because we can and maybe next year fewer people will feel lonely, depressed or unhappy and hopefully no one will need reassurance that people are actually there for them, ready to listen; ready to love. They won’t need reassurance because they will feel it.

It is way past midnight now. It is Christmas Day, 2016. In a few hours my boys will be up and will make their way to the tree to open their presents and their father and I will watch and take in every second and savor it. Later, the phone will ring and the calls from the family will come – the hardest being the one from Mom as it will be the eighth one where we would hear her voice without Dad’s and she will stoically try to hide her grief and sadness over how much she misses him and we will tell her it is okay to feel the way she does; that she should remember how much he loved Christmas and how many, good ones we were so blessed to have shared. I will remember a funny Christmas moment with him and she will laugh and for a while it will be better until later, when she is in bed alone. She will cry, say a prayer and pull herself together again, for herself, for us and because he would want her to, even though he would have struggled more than she would if the situation was reversed. But in the end, we will all take comfort in the living and we will know and accept that we have been blessed to celebrate another Christmas with our family and friends. I don’t take this for granted. And if f you have stumbled upon my blog and read this, don’t take it for granted either. I may not know you but I do want to wish you a Merry Christmas. I don’t know why I chose to write this today. I felt that I should – that I had to … that it was important that I did. Like me, you too have been blessed to celebrate another Christmas. I wish you the joy, peace and love this season is intended to bring.

If you feel lonely, know that you are not alone and that even though I may not know you, I think you are a gift and that you are absolutely significant to making this world a better place and you are important. You are here for a purpose and it doesn’t matter if you know what that purpose is. You will not have all the answers. I do not have all the answers but I know you are not a mistake. None of us is. Believer or not, God bless you and keep you and may His light shine upon you and may you feel the warmth and power of His love, today and everyday.

Leave a comment Posted on December 4, 2016December 4, 2016 autism, Uncategorized

On the Eve of Fifty, Everything’s Just Fine.

We have swapped pumpkins and cornucopias for holly wreaths, twinkling lights and Christmas trees and the weather has finally changed. It is still rather mild and we have had only one snowfall and although everything has pretty much melted, winter is officially here which means my 50th birthday is less than 2 months away. For the past two years I have blogged about the goings-on in my life as I approach this milestone. I looked at myself, looked at the way I approach things and and the way I live my life and somewhere along the way I had this notion that I would have it (my life) all figured out with all the answers to how to “be” as a 50 year old and on the day I cross into that year, I somehow will start this next stage of life differently. Along the way it felt like I was preparing for a trip to a foreign land, learning as much as I could from my experiences so that once I reached my destination I would be free of all doubt and confusion, ready to accept the wondrous things that would come with new territory. But with barely 2 months to go, I realize there is no new start, no expectation of anything remarkable save for the fact that I have been blessed with a good and healthy life and have been able to walk this planet for 50 years and for that, I am thankful.

Lately, I have been driving a lot for work and while it can be exhausting, mostly I look forward to my road trips where I’m in the car by myself, listening to music that matters to me and basking in that glorious time of reflection and peace. I also had the house to myself this past weekend, the boys busy with their lives out and about with their sports, leaving me to care for the elderly dog. Having been on the road for 4 hours of my 12 hour day and coming home to the silence of a man free house, I was able to continue my thoughts on turning 50 and what I have done and where I am in my life now, decorating for Christmas all the while.

I busied myself trimming the tree and thought about what I view now as the absurdity of my teen years. Everything was way too important and ever so highly embarrassing. God bless them, but teens are just not fit for society. They need time to flounder and they need to be allowed to sort out their unready-for-adulthood brains in their own way and in their own time with as much or as little guidance from us as they approach their 20’s. My teenage years were no more special than any other teen’s. Not quite a woman but by no means a child, there was just no perfect place for me. I was confused, I had occasional clarity. I was bursting with self esteem then riddled with insecurity. I yearned to fit in, was desperate to stand out, longed to be cool yet craved to be alone and invisible. I wanted big boobs yet secretly wanted my small ones to go away because I hated that my body was changing. I wanted to wear make up and be fashionable but I loved being in a t-shirt, shorts and running shoes. I was the graceful dancer with every hair in place pulled into a tight bun on the one hand and the sweaty, after lunch break. tennis and volleyball tomboy with hair flying everywhere or tangled like a nest on the other. I wanted to be independent yet expected my parents to conveniently make things right, right away – which of course never happened, thank goodness. I wanted a boyfriend, I wanted to be free, I wanted to go to parties and be allowed to do some of the things other teens were able to do but my parents were fairly strict and did not often allow me to go out late at night before I was 18. I thought that life was great and I thought it was unfair as I drifted in and out of confidence. In my teens, I realized that my childhood passion for the arts continued to give me great joy. However it was a passion but I was made to understand would not yield great earnings and that I should turn them into hobbies and while I did resent my parents for this particular guidance, I know they were doing what they thought was best with the knowledge they had at that time.

As I looked back on my 20’s (which for me was a more polished extension of my teens), I smiled as I recalled how adrenalized I was about everything. I was young and eager to make a difference clear enough for all to see. In my 20’s the world raised me up and brought me crashing down, often on the same day and I spent a lot of time trying to figure out the true meaning of everything, wondering what the underlying tone was when someone said or did anything only later figuring out that sometimes people just did or said stuff and there was nothing more to it even though I wanted there to be. In my 20’s I was emotional. I made myself feel everything and I mean everything, from sponsoring children in underprivileged countries, to the plight of dolphins caught in tuna nets and really getting into everything earth friendly, to listening to anyone’s sob story to worrying about my family….sigh…I went in 120%! That was all well and good but it was a little exhausting for those closest to me because back then my emotions were pinned right on my sleeve where everyone was able to bump into and bruise them and have them spill onto everyone and everything like hot lava. I was always ready to argue or get to the bottom of everything right away because that was my agenda and I’m pretty sure even though they loved me, I had moments when my parents and sister considered me quite off putting. Can’t say I blame them.

By the time I was 26, I sorted myself out and started being more comfortable in my own skin. I had lived on my own for quite some time, paid my rent, my bills, took care of myself and had my job at the bank in addition to several freelance television jobs that kept me busy. At 27 I felt that Tom and I were in a good place in our relationship and we moved in together until work took him out of Toronto for the beginning of what were the coolest years of our lives. I made the decision to join him and leave my family behind, living for 2 to 5 years at a time in different locations around the country. There was eventually a wedding, new jobs, followed by a baby born in the east of the country and another born in the west and adult life in the blink of an eye was in full force.

I have lived a whole lot of life that seemed to snowball right to the eve of my 50th birthday. Having a special needs child, I have not always enjoyed a “normal” motherhood and if you are going to say “what is normal anyway”, stop right there, because normal is a life raising kids where you don’t have to have a plan A, B and C to go for a walk or for every single trip to the grocery store, or to school. Normal is booking a vacation and not having to tell everyone involved with your trip from the travel agent to the airline, to the hotel to the restaurant that you need to make special arrangements so that maybe you could have a relaxing and enjoyable vacation. While it is better now because we put in the work, time and love, we have never been able to just get in the car and go – ever. But even with all the trials of having Adam, I would not trade any of it because this has been and still is our journey and mothering these boys has been my purpose in life. It has made me and the life I lead, worthwhile. I remember always struggling to figure out what I was meant to do with my life; why was I born? My moment of clarity came New Year’s Eve, 2000 when I woke up from napping n the couch in our apartment in Montreal . I nodded off while I was waiting on the ball to drop in Times Square while watching Dick Clark’s Rockin Eve, and I glanced over to where Tom was sitting at the computer and saw Adam’s playpen and could hear the occasional static of the baby monitor and I said to myself …”Oh yeah. Right. I’m married with a child”. I remember thinking life was really perfect. Too perfect and I had a feeling the other shoe was going to drop but I didn’t know how big the bomb was going to be until Adam started showing signs of autism and I realized what had been looming.

In your 30’s you start to settle into life . You are used to working and you know how to live out your role as a member of society, an adult, a spouse, a worker and a parent. Like most parents you look at the state of the world and you just want the best for your child and you focus on giving them a life even better than yours. You set the example, you guide, you encourage and love and from time to time you are just scared shitless of screwing up their lives and even though it is perfectly normal to screw things up from time to time, we are hard on ourselves when we do. Most parents want to create opportunities for their kids to succeed and somehow hope to perfectly balance that with protecting them while trying not to overly shelter or smother them. Add to that the responsibility of moving ahead in your career, always competing with yourself and others for a better salary so you can give your family a comfortable life and hopefully give yourself some kind of retirement. Yes, your 30’s is a different kind of struggle and in our family, we were soaked by a big bucket of autism.

We became a family living with autism in 2002 and we always will be. There have been and still are so many difficult times but I have to say there have been many more glorious times and I could not be more proud to be Adam and Logan’s mother and Tom’s wife. Throughout the years I have met many fabulously kind and generous people and very talented and unique people via my firstborn son and even more through our charity Adam’s Hope. When Adam was diagnosed, I was called to sacrifice work many times to be a wife and mother in an era when it is more acceptable to have a career than be at home raising your children, being a wife and running a household on one income. While juggling the proverbial balls of my life, there were days when I juggled them perfectly catching them all, and other days when things would go hopelessly wrong, I would lose my grip and drop them, only able to watch them roll far away from me. You see, with autism, your bad days are the ones spent trying desperately to reach a child who may or may not connect with you when you desperately need him to so that you can do other things you can no longer ignore. A child with autism was just one of the balls of life I found myself juggling, only when it slipped out of my hand, sometimes there was no catching it and it took the other balls (paying the bills, preparing meals, changing the soiled diaper of the screaming baby etc) tumbling down with it. It was draining but I have had to (and to an extent still do) try and figure out what my son needed or wanted and then of course I have had to advocate for my son, and have been his voice most of his life while making an effort every day to give Logan the regular life he deserves. This was not how I imagined my life would be with constant re-adjustment and scheduling and modifications and therapy for Adam but there are days when I can honestly say I am happy I did not miss out on all it has given to me.

By the time I was done decorating our home for the holidays, my mind drifted to my 40’s. While still quite consumed with family, work and autism, it was in my 40’s that I truly appreciated life and all that Tom and I had done and accomplished as a couple and parents and in our past and present careers. In my 40’s I could see that this marriage and this life we created for the 4 of us had the mettle to withstand the test of time. I had learned and was continuing to learn so much more. My outlook on life was based on a wisdom I had heard my mother and her friends speak of and I was truly grateful that I was getting older. I have never had a desire to re-live my 20’s and certainly do not miss raising babies and little children like I did in my 30’s. My 40’s allowed me to confirm to myself that I am bat shit crazy about Daniella. I love her dearly and I am proud of her. I have survived the grief and pain of my child’s diagnosis and I have watched both my children accomplish far more than I have ever anticipated. Together, Tom and I have overcome many difficult times that were exacerbated by the fact we were trying to raise a child we were barely able to understand and trying not to deprive Logan of the attention he needed and deserved. The effort we have put into raising them, the attention, love, care and independence we have given them and expectations we have placed upon them have helped them become young men of whom we are tremendously proud. I have sacrificed my career path to raise them and I have done all that I was supposed to do to get them to this point in their lives and now, while still here for them, I get to do what I want to do and it feels great.

In my 40’s we moved our family across this country for the last time to a place I do not love but I can tolerate because I am able to leave it often and get to cities east and west of here, many times in under 2 hours. We moved here primarily because my husband’s parents are ailing and he needs and wants to be here for them. It is a place quiet enough to raise a family without the hectic nature of a bigger city. It is one where I have made many acquaintances and at one point, even called some people friend, quickly learning that even in your 40’s friendship does not have the same meaning for everyone and the best thing to do is to remove those people from your life and find friendship in the places and things you know best. In my case, it was keeping connected with my friends in the many cities and provinces in which I have lived and the group of women I was able to reconnect with thanks to a life changing 30th high school reunion and the click of mouse that bridges the distance between us. I stood beside these women when we were just girls and being able to chat with them and keep up with their lives is a blessing and I am honoured and proud to refer to them not just as friends but as sisters. Knowing they are just a car ride or a click away has kept me in tune with my roots, what really matters in my life and who I truly am. Having this reinforcement from them has allowed me to seek and make smarter connections with people close by who are intelligent, kind and interesting human beings with whom time is well spent.

One of the most difficult times in my 40’s was the year we lost our father. His death allowed me to take stock of my life, get over my arrogant assumption of longevity and realize just how little time there is to spend with the ones we love and doing the things that really matter to us. In my 40’s I began to take ownership of my actions and remove many of the things I would do for others (albeit worthwhile and necessary at the time) from my life. I considered how pressed for time we always were and I started to eliminate the things that consumed way too much of it. I passed on the operation of my charity to three younger and fresher mothers and cut back on volunteering my time for many things. I realized that people often forget that we have Adam and that he needs extra guidance. I think people forget that we can’t just commit to things the way others can because we often have to plan every minute of our day just to keep things running on even keel in our home. We should be the last people anyone asks for help yet we have stepped up and done our fair share of giving of our limited free time. We have done a lot for charity, spending precious days when we could have been with our boys with other people and now we are done. Now that they are teens my husband and I are are looking forward to creating new memories with our sons and spending time with dear friends and family. I want to plan escapes where I can enjoy the performing arts and sporting events and culture with my family and go away on family vacations once a year instead of every two or three years now that we know for certain Adam can handle long periods away from the routine of school and home. With regards to work, I am will continue to mold our business into the well oiled machine it is shaping up to be and will work side by side with my husband to make it successful and unmistakably ours.

I am thrilled my 40’s allowed me to really dig in and be okay with who I am and excited about who I am going to be. Known to be outspoken since childhood, I have learned over the years when and with whom I should share my opinion, generally doing so only with people worth the time. I have learned over the years when to persist and when to cut and run and I have truly digested the importance of self preservation. I know who I like and whom I can live without. I know who and what to take seriously and who and what I can ignore. Loving oneself, protecting oneself, making one’s happiness a priority and being kind to oneself key to having success in all areas of one’s life as well as learning to accept the long hard times and the times when we fail. In my 40’s I also learned to own my health and my faith by often connecting the two. No longer a gym member or at mass every Sunday, I enjoy yoga, my ballet and contemporary classes and working out at home because it is in those times I am able to still my mind and speak to the Divine and truly connect and pray. I have found that while I still enjoy the beauty and ritual of the Mass my connection with God is strongest when I am taking control of my physical and spiritual health …and it’s peaceful, simple, easy and, well … nice.

Throughout the different phases of my life I have had unfulfilled wishes and regrets and for the most part those are on me but I am thankful for them because it is from our mistakes we learn to do things better for ourselves and for others. Throughout my life, I have done what I was supposed to do and now as I approach a new phase of my life, I am going to do what I want to do. By the time I had my house decorated for Christmas and was admiring it from the couch while sipping my tea, it dawned on me that there really is nothing to figure out about turning 50, nor is there anything mind-blowing about it. I know that now, because it seems I already have it all together and there is no need to spend precious time trying to figure out how to live life. I have worked on my marriage, my family life, my career. I have compromised and sacrificed, taught and guided. I have worked through the obstacles, have won and have lost. I know there is so much more good and bad still to come but I am armed with a great deal of life experience and no fear. I know what I like and what I want and I don’t compromise those things anymore. From the moment we are born, life happens and all we can do is the best we can with what we have been handed. Until I die, I will always have to roll with the punches and I suppose the one thing getting older really changes is how we choose to roll. I hope the people dear to me will have long and happy lives and I hope for the same for myself, my children and Tom, the love of my life. I hope to see many places and experience many things that will fill my soul with joy and I hope to see my children grow into adults and watch them chase their dreams, achieve them and soar. Life is hard and it can be ugly, painful and even cruel but somehow these are the ingredients so crucial for what makes life fantastic and joyful for out of the darkest nights, dawn the brightest days and we should be mindful to taste the bitterness of the bad so we can learn to appreciate the sweetness of the good … life is too short to do otherwise.

To all my SJC sisters and friends who have turned and are about to turn 50, I thank God for you and for being so blessed to have you in my life. Your friendship crosses land and sea and I am so happy we were able to find each other again and happier still to be able to get together and celebrate with a few of you. I wish you good health and all the sweetness life has to offer. I hope we stay connected for years to come and are able to have many more opportunities to gather together . I love you all, my 50 year old friends. Cheers to a new phase of our lives. ~ Danie.

Leave a comment Posted on October 12, 2016 Uncategorized

Four Months to Fifty: Looking Back on Summer – for Me, Smart Continues to be Sexy.

He is a joker 99% of the time, making all kinds of weird faces but I think I have a handsome dude. I mean that’s what starts it, right? You like the way a person looks according to you…

Source: Four Months to Fifty: Looking Back on Summer – for Me, Smart Continues to be Sexy.

1 Comment Posted on October 12, 2016 Uncategorized

Four Months to Fifty: Looking Back on Summer – for Me, Smart Continues to be Sexy.

He is a joker 99% of the time, making all kinds of weird faces but I think I have a handsome dude. I mean that’s what starts it, right? You like the way a person looks according to your taste and then you keep looking at them, taking them in – their gestures, their smile and then you get to know them and if you are lucky, really know them before you decide you want to spend your life with them. I think love has a lot to do with using your head as you follow your heart. It is a combination of so many things including luck and intuition with a little dash of abandon. In addition to the way he looks, what I fell crazy in love with was his mind. We have had, and continue to have, the most fascinating conversations and at times wonderfully solid, prove-our-point intense arguments, usually in bed on a Sunday morning, through the time we walk the dog to the last bite of breakfast. When Adam and Logan got old enough to grab a bowl of cereal and head to the TV and eventually morph into late sleeping teenagers, our Sunday morning conversations became more frequent.

We talk about the strangest things sometimes – random things that usually start with me blurting out questions about stuff that just flies into my mind. There have been conversations about the Hadron Collider, politics; audio; every genre of music, architecture; athletes; history; Einstein, Dalton and Darwin; why plaid was ever a concept, modern medicine; parenting and finances. We’ve talked about people, clothing and cars; art in all its forms; movies; growing up in Trinidad and why our avocados are also called zabocas and why they are so much bigger than the ones in California and Mexico. We’ve talked about growing up in Canada, the TV shows that were unique to where we grew up and the ones we watched along with the rest of the world. Of course we talk about our children, our parents and siblings and what we hope the future will bring. We talk about sports and food and the places we hope we are fortunate to see together and what the other should do, if the day we are to become a single unit, comes sooner than we would like it to. I would like to think every couple talks and have healthy arguments like we do – that every couple finds their spouse interesting after the first 5, 10, 15 years and beyond. Do we get fed up with the stuff of family life? Of course, we do. That’s to be expected because it can really wear you down but you can’t let it grind you down. If I had to pick two things to tell people getting married it would be these –

If you have a fight, and I mean a good old all out, drag down, spit-out-hurtful-crap kinda fight…stop and take a moment to remember why you fell in love in the first place. You should be able to find the answer and realize that it is greater and more powerful than what caused you to fight in the first place. (if it isn’t, then of course, you have a decision to make)

and

Never let tension drag on. Talk about how you feel no matter how long it takes even into the wee hours of the morning…talk it out and apologize if you are wrong. Umm … I have to throw in one more …must be the Trini in me …

Definitely have make up sex. Have lots of sex … you are married after all. Keep it spicy. Keep it fun. Keep it alive. Make your partner feel special because they are because they have chosen to put up with you and most likely one, two or more children! Marriage is hard work man … may as well have all kinds of fun.

But as usual, I digress. Back to Tom and his mind. As creative as he is, and as avid a reader, Tom enjoys everything numeric. He speaks the language of numbers fluently and loves that with numbers there is always a conclusion, a definitive answer and to him, that makes sense. Numbers don’t scare or confuse him and after a neurofeedback test we all did, it seems that numbers keep him quite calm and happy. This ability is what makes the difference in the way we run our business and when you sit with him, you see how his plans to save, grow and protect your income make sense. Sometimes, if you find numbers as fascinating as he does, the meeting becomes more of an interesting conversation between two similar people and next thing you know, you realize you are fond of the same music, games – the list can go on. However, if you really, really, really are not numerically inclined, but you know you need help and you are open minded and you find yourself meeting with him, you also have the opportunity to sit with me, the translator. I help intimidating jargon that tends to pop up seem more friendly and together Tom and I will make the numbers relatable and user friendly to you so you can leave our office with a sound personalized plan that makes sense. It’s a win/win situation …plus we have a giant jar of Skittles in the office.

This past June, Tom was asked to speak at our company’s Congress. It is a 2 day forum where business ideas and strategies are discussed and we come together as a region to share our thoughts and learn from each other. Tom’s topic was about getting your Financial business up and running. He titled it ” Breaking Ground – Tips and Strategies for your First Five Years of Business”. Adam was busy finishing up the last week of his Grade 10 year but Logan was able to join us as he was on a field trip in Toronto (close to where Congress was being held) to wind up his Grade 8 graduation year at Elementary School. I think it is important for children to understand what their parents do and and how their work impacts people’s lives. I think it is important for them to know just how it is parents manage to keep a roof above everyone’s heads, clothes on their backs and food on the table and I think it is an important part of their education and I want my children to also understand the importance of giving a family member support by their mere presence.

Tom and I knew by 2003, it was time for us to get out of Radio and Television. The industry is not what it used to be and with the internet being as powerful as it is, the industry will continue to have a hard time engaging the current younger generation and future generations. Salaries shrank, many jobs became redundant and the job (whatever was left of it) owned you and each month the hours you put in were not reflected in your pay slip. The lack of creativity and shift to reality television that literally airs everyone’s dirty laundry on international TV is another example of the drastic change in the business and we knew in order be a part of something we were proud of and in order to continue to provide for our children the way we want to, address Adam’s needs and to retire the way we hope to, we had to make the shift to a different career. With my banking background and his flare for numbers and interest in economics, Finance made sense and though we still dabble in creative writing and voice work as paid hobbies, we have never looked back.

One of the beautiful things about training for a career in Broadcasting, is the ability to speak in front of a crowd. We each are capable of doing that without boring people to tears (let’s face it, even if you love it, numbers is a pretty dry topic). To Broadcasting, we attribute our ability to make our presentations interactive and entertaining and our effective use humor – a skill we are developing in both Logan and yes, Adam as we have helped him come out of his shell and deliver speeches to his elementary class back in the day, about topics he loves. Tom’s workshop at Congress was divided into two sessions and each time the room was filled. Blessed with one of those unique, richly textured broadcasting voices that makes you want to listen to him, he was engaging right away and as such, no one was distracted by their phones or whispering to their colleague beside them. He spoke about his first year in the business and how important it is to develop a strong foundation in the early months of advising. He spoke about how to look beyond what you read in a person’s portfolio and looking for ways to help clients, save them money, what were the right questions to ask in a review and how to really listen to your client and how to find out about their changing needs and goals. He spoke about why he attributed the success of his first two years to the methods he used and segued into his difficult third year, which to be honest, was mostly because he had to put parenting ahead of work more than usual that year because our Adam not only had to deal with autism but puberty as well. He then moved on to the following years and what he did to right the business ship while helping me keep the family vessel and Adam on track and he said something I will never forget. He said,

” If anyone should have failed in this business, it should have been me. The odds were always against me because I don’t have the easiest of families because of Adam’s autism. We had very little respite in place for Adam at the time and we have always had to keep life as normal as possible for Logan with all that we have to do for his brother. When we decided to start on this new career path, to help me get started, we took the plunge and had Daniella leave her part time job to come work with me. There was no steady spousal salary the family could rely on and we had very little savings we could tap into. In our family, we tend to jump in and swim because sinking is not an option. There are no great excuses for not trying or not performing. As humans, there are many traps that we create for ourselves that we can fall into and use as excuses for failure if we allow ourselves to do so. I knew all I had to do was work, serve my clients in the best way that I could and just keep going. If I had a bad day, I gave myself some time to take a break and have that bad day but the next day I would re-group and get right back at it again because three people at home were relying on me. If you do right by your clients, if you do everything in their best interest, if you are honest and fair and if you have a good support system, you can be successful at this job and anything you put your mind to,”

The last part of his presentation was centred around financial planning for an overlooked group – families with children with special needs. He explained how to use the tools we have as advisors in the most effective ways for these families and how to use them so that families can be tax smart. He spoke about wills, probate, special needs assistance grants and by the way everyone was taking photos of his power point and writing notes, I realized they were learning something new…something that had been right under their noses the whole time but they just did not see it. He was showing managers and “big wigs” how to do it right and looking at this realization on Logan’s face, I could not be more proud. Tom was also teaching his son, how to teach other people. He was showing him how to share his knowledge and showing him how to deliver his ideas in a strong, dynamic and effective way … humph… it was quite the effective “take your kid to work day” session and Logan was honored and proud to be a part of it.

I am quite an internally emotional person. I am not a crier, in fact I come off sometimes as cold and sometimes a little unfeeling as I don’t always show outward emotion and when I speak, I can sometimes be quite blunt and honest but Tom is the only person who can make me tear up by the videos he creates. He ended the session with a couple videos one of which featured Adam to bring home his point. Now throughout the presentation, he had video clips from movies, he had images and clips of various people and situations, that allowed him to prove his point in a light visual way in between his statistics, tables and charts. The videos, which I had seen many times while he was preparing for the presentation came on the screen and they simply showed the value of the life of a person with special needs and why helping their families continue to give them the enriched lives they deserve was so important, and why in our business compassion has to be the first ingredient.

My tears were ones of pride and joy and out of much admiration for him in BOTH of his sessions because Tom does things for the right reasons ALWAYS. He was put on this earth to help people and even though in our situation, we need help ourselves, he always gives and gives and gives – of himself, his money and his time. What was even better was that Logan (who is so much like him) got to see this and got to see that nice guys do finish first … it may take some time but it DOES happen.

Tom got a standing ovation after both sessions. There were lines of advisors wanting to express their gratitude and shake his hand. There were advisors wanting to know more, asking for his business card, wanting a copy of the presentation etc., so Logan and I had to go to work dealing with that. As I think about each moment in those two presentations, my heart gets so full. I was never looking for a husband. I never pictured the white dress or walking down the aisle. I had dated a couple nice guys before Tom and a couple bozos and I had gotten to a self comfort where I was happy to just be. I was capable of taking care of myself and was interested to see how my life would play out. I would say sometimes I am not an easy person to figure out or be with. I have my ideas and opinions and I am proud of who I am and I don’t bend easily so I never thought I would find anyone who would be a great partner, soul mate or husband … but here he is and there he was in a damn fine black suit, “awesoming” all over the place delivering what he knew, quite eloquently in an entertaining and informative way with passion, humor and his great laugh. He was talking about work but he made it human and he made the clients human and he made his peers care and while doing all that, his math was impeccable and the numbers made sense and I could have had him right then and there he was so smart and so damn sexy!

Now, as I drift into the coolness of fall, sip my chai and reflect on the summer and its special moments, I smile at the thought of my math geek and the complete package that he is to me.

He tries to make us happy every day. If there is a problem, we can count on him to fix it and if we need a dose of fun, he will provide it.

He loves life, he loves his parents, his brother and sister, he loves their family, loves my family, he loves our boys and he loves me.

He honors the vows we recited in front of twenty-two people nineteen years ago on one beach and the vows we renewed nine years ago, on another.

My 10 year renewal vows to Tom

Tom’s 10 year vows to me

He can give me a potato chip and make me feel like a queen and the only way I know how to honor him is to put my thoughts into words especially for his sons to read. No one is perfect (my God, I am hopelessly flawed) but we can learn how to treat each other like we are the perfect beings we were created to be.

Every so often, we get an opportunity to take in the essence of someone we love, or someone we call friend. I like to think of those moments as golden moments because it is so easy to get caught up in the busyness of life and lose sight of what is special about a person. And this past summer, the last one in my forties, Logan and I were given one of those golden moments. It was wonderful to “see” Tom again and know how very important, and kind and good and loving he is. In marriage you get to see the struggles and the little annoyances often. They add up and piggy back on the responsibilities of adult life and they spill over in a big sloppy mess onto the relationship and if you are not careful, they cover up the golden moments, those precious lifelines that keep couples in contact with each other at a deeper and more significant level. Watching my widowed mother over the past 8 years, I am more aware of the importance and power of the golden moments because in a month, a day, an hour or a second a person can be out of your life forever and wouldn’t it be tragic if we never took the time to see them for who they were, to see what made you love them or to not take the time to tell them what they meant to you and that you just simply loved them no matter what. My mother and father appreciated and loved each other and as my sister and I got older and moved on, it was apparent that their love and friendship knitted them even closer together. On the 17th of this month (October) they would have been married 52 years and I know there is not a day she doesn’t wish he was here. I know one day Tom or I will find ourselves alone and like my mother, we will survive because like her there will be no regret about not doing what we should have done for each other or not saying the right things to each other.

Who knew this lone wolf would ever have gone down this path of partnership and love with someone who makes the hard times bearable and the good times, spectacular? Marriage is hard, grueling work. Two people from completely different families and backgrounds come together and are supposed to find a way to co-exist for years sometimes even bringing children into the mix. At first glance it is a scale that tilts heavily on the side of failure but we are more sophisticated animals than those in the wild (at least we are supposed to be) and we are responsible for communicating and compromising and being honest and fair and nurturing and most of all loving, so … we persist and some of us fail and maybe some of us try again and sometimes it takes some of us to hit the third or fourth time before it becomes a charm. I remember when I first took Adam to Trinidad, my uncle Kit looked at me, smiled and shook his head and said,

“My goodness, look who’s married with a child. What a thing!”

My family knows me well but I am glad I turned out to be somewhat of a surprise. Surprised myself too but I am ever so grateful things unfolded the way they did, for richer or poorer, sickness and health, till death do us part, Tom James, right?

I am yours; you are mine. It is as it should be.

(“Elephant shoe“)

~Yella~

Leave a comment Posted on September 10, 2016September 10, 2016 Uncategorized

From Home Straight to Heaven, Making No Stops in Between.

*(This piece was written yesterday, September 9th, and just as I was about to post it, I had an emergency with my younger son. He is okay and now that I am home and all is said and done, I thought I would post this, as the whole time I was sitting with my own child, my mind was also on someone else’s.)

I had so many plans for this morning, yet I find myself sitting here in my living room, my house quiet, my heart broken and a million questions and thoughts in my head. I suppose I am fortunate to be able to write freely. Words swim in my head all day long, ideas, memories, phrases, dialogue. I have been like this all my life, so to me, it’s as normal as the dizziness and the neck aches that accompany the endless movement of words in my mind some days. I am sitting here, tears flowing down my face and I can’t stop them because of the news I read on Facebook – that maddening forum that updates me on everyone and everything way too often, interrupting my day like chronic hiccups, yet I cannot leave it. I have had to pare down my friends to the people in my life who I need to stay in touch with – my friends who live in cities where I once did, my dear sisters from my high school Alma Mater, St. Joseph’s Convent, my cousins, my Trinidadian friends, some people from Syracuse University and Ryerson and a smattering of people in the community where I live.

Today I read that the son of one of my SJC sisters passed away. I have known this woman since we were children in Maria Regina Grade School on Abercromby Street, Port of Spain, Trinidad. She had always been this artistic, tall, beautiful creature with a huge smile and bubbly personality. I don’t remember Leisel upset in school. Ever. She was fun! She was life! … One of those unforgettable people and it was wonderful to be able to reconnect with her after all these years.

Time did what it does and we all grew up, some of us moving to different places, some of us staying in Trinidad, all of us going our separate ways, yet thanks to a 30 year reunion and two remarkable women who stop at nothing (Carla and Debbie) we were all connected by Facebook in a matter of months. Though we all could not attend, many of us did and the connection on Facebook strengthened the bond between those present and those present in spirit. We were in each other’s lives again at an age when we were all fully women – no longer high school girls but women with lives that had history and stories of good times, hard times, times of real struggle, failure and success. We were mothers, aunts, some were grandmothers, career women, friends, wives, ex-wives,care givers and no matter where we were, or what we did with our lives, we all had a common approach to handling the journey that is life. We turned out to be an army of the strongest women I will ever know, whom, I feel I can count on always and as maddening as Facebook is for me at times, it has allowed my true friends…my sisters, to be just a click away.

I thought I’d be done sobbing by now, but I can’t stop, it seems. In my head right now, I see us sitting in class in Form 1M, with a ceiling fan struggling to oscillate to keep us from melting in the Caribbean heat. I can see Leisel next to Lucette facing the giant patio style sort of French doors that allowed them to look onto the school of our male counterparts at CIC (St. Mary’s). I can see Lorna and if memory serves me correctly, I think Karlene was in my class too. In my mind I see us in the white blouses and strange sea blue, greenish ( I think gabardine) skirts we wore in our first year, before the material changed, white belts, our “washikongs” powdery with Whitening and white turned down socks. Young girls dressed with so much white, perhaps to maintain some purity of spirit and mind as we teetered on the brink of becoming young women. Who knew that in one class 4 of us would mother children who were special. Knowing what I know of people’s lives, who knew one girl in our year would not live long into adulthood, or that others would have to fight terrible illnesses, deal with difficult marriages, deal with judgement from loved ones, would lose a spouse and another girl just a year ahead would lose her adult daughter in the most tragic of ways. Where was that crystal ball?

Life is a strange, perplexing, meandering river. As we float from bend to bend, we sometimes bounce off the rocks and miss out on some things. Other times we bank safely on the sand and achieve greatness and everybody, everybody hits the rapids and capsize once in a while, getting something that they have to deal with for a long, hard time. In life, there is no answer to the question Why me? No answer to Why us? …Why my child? … Why my sister(s)/ brother(s)? … Why my husband? … Why my parents? … Why my friend? When you get the hand you are dealt you have to get out of bed, rub your eyes, take a breath, get to your feet and start the day and the next and everyday from there on end because even if you didn’t sign up for it, the life you have is the one you got, every damn day and you just have to make the best of it and make it work. Every single one of us who went to our school, (and I am sure women attending other schools in T&T will feel the same about their camaraderie) …all of us posses the mettle to stand up and deal with our lives and move forward. While a situation might really rock us, none of my SJC sisters ever crumble. No matter what our faith or beliefs are we are strong and when we are not not, we acknowledge the moments when we are weak, we accept them and we find strength in others and in our God, knowing “this too shall pass,”.

I am perplexed by life all the time and particularly today. As a mother of a child with special needs, I wonder what it must feel like for my friend now that her boy is gone. Today she must be very busy as there is a lot to do when a person passes away. It will be punctuated by tears and sadness, but what is she going to do a few days from now after he is laid to rest. There is a routine with special kids. Mind you, her journey with her son was so much more involved than I could ever imagine. I cannot fathom the things she had to do to care for her boy while raising her other children. I can only imagine she needed more than 24 hours in her day and that there was never enough help and not enough dates when her and her husband could just go out and have a coffee and were there ever enough moments when she could just sit and be still for a decent amount of time? The routine she once had is gone and a whole lot of stuff that she had to deal with will gradually not need her attention, and while it will provide some relief to her, and her husband and allow more time for them and their children, it will be a huge void after years of doing all that they did for him. I wonder what will she do now? How does one go from doing so much to not doing it anymore? But, she is one of us and she will know what to do. There is one consolation I will mention here but I must warn you, reader, I am not being insensitive. I am speaking as a mother who has a child that will always need me albeit not physically or emotionally all the time, but he will need me to make decisions for him, major decisions for his whole life, beyond my grave. I feel that if there is any consolation in the loss of her son, my friend can always know that he passed surrounded by parents who were there the day he came into this world. He was ushered into the world by love; he left it in love. My son is a physical phenomenon. It is part of his autism, actually. He will out live us and it will not surprise me if he outlives his younger brother and younger cousins. I will not be there to usher him out of the world and if there is no family to do so, I can only hope we set up our Will effectively enough that at least a compassionate stranger will be there for him at that time. We live in a world that has shown me time an again that good struggles to trump evil. Kindness is not as abundant as it used to be and there is little time for anything, especially for those of us who need just a bit more time. When my thoughts go to that day, I occasionally wish that my husband or I could be with him, because no one will ever know him or love him the way we do. No one will know the right things to say to him, or how he likes his arms squeezed or remind him how to breathe deeply so he can deal with pain. No one will know the right song to lean in and sing quietly into his ear, that will ease his anxiety. If life goes the way it should, I will not know who will be there. I can only hope it’s a relative … someone who loves him or at least cares a little.

The world of special needs is so involved and heart wrenching, so crazy and frustrating and draining yet so rewarding and filled with love. Reading my friend’s post today is the stuff that shakes my faith. On days like today, I do not understand why people say God does not give you what you can’t handle. On days like today, I don’t understand what I am supposed to do on this journey or why special children comes to some people and not others, or why after years of difficulty, pain and hard work fueled by love and determination, my friend’s son could not get better? Why could their family not have a fairy tale ending? I read of miraculous outcomes all the time. Why couldn’t he be cured miraculously? Well, “that’s life”, right? I will never know why and I will leave it at that.

My heart aches for my friend, her loss and all the days ahead that will be so strange and difficult. I know she will feel release and I hope she will feel a sense of calm come over her in time. We connected occasionally (as much as time allowed) and I know she worked so hard at raising her kids, caring for them and she put her all into her job… she is a force of nature and when I learned a bit about her life, all I have is an abundance of admiration and respect for her. She does it all and she does it with such grace. Her beautiful boy is at peace now. No more discomfort. No pain. I wish her peace over time to heal her sadness. I wish her joy in his memory, in his spirit and the spirit of her other two young ones and I wish her and her husband endless love to strengthen their bond for years to come.

Like every child, her son was s a gift and a source of love and a a beautiful opportunity. He went from his home on Earth, straight to Heaven, making no stops in between. He went to rest in peace and joy knowing he was loved throughout his journey and if heaven is what we think it is, he will watch over his family for the rest of their days.

Leisel, it is such a simple statement that does not do justice to the way anyone feels right now, but we are all so sorry for the loss of your son and we are all just a click away. Blessings to you and your family my darling. ~Danie

Leave a comment Posted on September 6, 2016September 6, 2016 Uncategorized

Five Months to Fifty: Me, My Mother,Myself.

In May, I took trip to Vancouver with my mother. Neither of us had been there before and considering she is 76 and retired, she’s healthy and has the time to spare and I could make it happen so off we went. We did all we could in four rainy days and I am glad she is a trooper because we could have easily been sidetracked and stuck indoors with the constant down-pouring. Armed with our umbrellas (like everyone in Vancouver) and raincoats, we got to Stanley Park, to Gastown, to the Art Gallery, the Olympic torch at Canada place, the harbour, The Classical Chinese Gardens … we crammed everything we could into our time together including catching up with my cousin, Natasha, whom we don’t get to see very often.

I live about an hour and 15 minutes away from my mother and sister, so anytime I can spend with them … with her …has to be planned and is very valuable to me. Like anyone with a family, there are many things about our loved ones that make us sigh, or shake our head and roll our eyes but the love we have for each other is fierce and glues together the fragments of our frustrations with each other to keep us whole. My mother is a unique character. She is very much the verbal martyr and tends to be very defensive. She is stubborn, does not always pay attention and talks while you are talking. She over-packs because of the “you never know” and “just in case” scenarios she has in her head and she just does not understand how I travel so light and how nonchalant I am about not having an oversupply of band aids in my purse or sample sizes of Advil, Tylenol, Gravol and Immodium.

“Why put yourself in a situation where you would have to buy these things?” she would ask, astonished.

“Because on every block there is a pharmacy and all these things are like 2 to 3 bucks”, I would reply, casually, sometimes cheekily.

I hate bulk. I hate having excess shit and as annoyed as she is about my empty handbag, I am annoyed by her incredibly overstuffed one that she has to dig into every five minutes. Still, she is my mother and I do have a lot of her in me, although to toot my own horn, with help over the years from being married to Tom, I have it under control. From Lumlin (her Chinese name), I got my sense of organization. Rare are the occasions when I leave something to the last minute. When I travel, I am packed about a week ahead of time because a week before that, I made certain everything that needs to come with us was clean and pressed. I get my need for order from her as well. I like and have to have a clean kitchen. If you want me to cook, the kitchen has got to be clean and tidy and I insist on a clean bathroom and made beds. After a long day at work, or a long day on the road, my eyes need to fall on certain things that are ordered and neat so that my brain does not go into visual overload (hmm…a little Adam-like I suppose). Unlike my mother, I can leave the dishes for later if I want to leave and go do something fun on a nice day. I have never let the traits I have, distract me from having a good time and I am okay leaving things for later when I have something else to do. My mother also passed onto me some very old school lessons in etiquette which I am proud to say I have been able to pass onto my sons. They know which fork to start with first when we are out for a meal; know when they need to wear a tie and dress shoes, shirt and pants and when to dress down. They often remember to stand when a woman joins the table and they open and hold the door in public and are polite with their actions and words. In a world so adamant about not doing things the way our parents did when it comes to raising our children, I am proud to say (while I understand why some people feel their parent’s way is archaic), I raised Adam and Logan pretty much the way my mother and father raised my sister and me and I am not sorry I did.

Like my mother, I adore my children and would kill for them as any parent would but I also believe there is a time and place for them and that they should not always be the centre of attention. I spend a lot of time with my boys to the point where, as they separate themselves from me as they get older, I am not sad to think that one day they will move on with their own lives, on their own path – I am actually proud that they are moving on and I am happy for Tom and me because it means that our uninterrupted time together is approaching. Children are wonderful but they can be draining if we let them be. Like my mother towards us , I have no guilt when it comes to Adam and Logan but respect for the men I am watching them become. I also have bought into her take on marriage, considering she had 43 great years with my father. My mother always made time for Dad. She was his greatest listener, advisor, friend and love. That time when they were sitting together, was their time and unless we were bleeding or near death, we NEVER interrupted them. Neither one of them contradicted the other when it came to the rules and expectations of our family and our home and the other thing that has stuck in my mind about their marriage was trust. When they were together, nothing could phase them – not money, not friends, not mauvais langue, not sickness, not death. I feel that way about my own marriage. I feel that with Tom in my corner, there is nothing that can harm me. We have this saying between us “It’s you and me. It’s always been you and me and we’re still here”.

From Lumlin, I have inherited a strong sense of loyalty. When I am your friend, I am a good one, to the point of being taken for granted sometimes and then if it gets past a certain level of tolerance, I end the friendship. Like her, I may be an ex-pat but I am a “Trini to de bone” because as we say in Trinidad, “one must never damn the bridge they cross”. When you move away from the land of your birth, it is imperative to stay true to your roots to help you meander through the culture you have chosen or rather, have suddenly found yourself. Like her, I feel one of my biggest obligations to my children is to make them confident in themselves and to teach them that they can do anything if they work hard. Like her, I am teaching them to dream and to reach and to know that even if they fall, they won’t fall far and like her, I have learned to give them these skills even on the days when I don’t feel 100% confident in myself. Mom raised me to be accountable for myself and my actions. She trusted me to do the right things and for the most part I did because I could always hear her voice whenever I was in a tricky situation, guiding me to make the right choices. She had a confidence in me that I never wanted to betray or let down and I see that in both my sons. They know that I know I gave them the right tools that they need for society and I know they work very hard to do the right thing. That being said, I have inherited a not so sweet side from my mother as well. Mine I think is a little darker than hers, lol, but it is in check. Let’s face it, my mother, like everyone on the planet has her “bad ways” too. My girl ain’t a perfect angel by any means. She can sting you with words when she’s ready and because I learned by observation, so can I and so can my sister but one discovers how to rein that shit in and release only when necessary – and in this world we live in where selfishness (most times) trumps selflessness and when people are just downright asinine, you might get a little venom from our direction … oops.

These skills (hopefully only the good ones, right? lol) my mother gave to me, are the skills I am giving to Adam and Logan because they need to be strong to face every single day in this world. They need to be strong to handle the dark times life will throw their way and I know that because I have lived through some dark days and I’m still here, in one piece, dependent on nothing more than my own will power because I was not raised to be weak or give up but rather raised to keep getting up and keep trying and keep moving on to the next day, next thing, next opportunity … just like my mom.

This trip gave me a chance to see Mummy. To see what makes her, her now and what has changed about her as she has gotten older. Her tech confidence isn’t what it used to be since she stopped working and she likes to lean on us for the simplest things regarding the computer and her phone, but we remain patient and we teach her and she comes around as we know she can. I think she has just decided there are some things she does not want to give too much of her attention to anymore and that is okay. She is still a busy body around the house, always cooking something (you never leave her home without a container of something tasty) or she is always cleaning something and though she does not have to, I understand the need to feel useful, so we let her (within reason – moving things in our house to suit her short stature does not work when the shortest person living here is 5’7″ and the tallest is 6’2″).

Mummy and I are extremely different. We are not besties. We are mother and daughter. I call her to chat and occasionally for advice or just a listening ear (as long as she does not talk over top of me lol) and we go places together. We cook together when we can, drive around together when we can and it’s nice. It’s comfortable. There are times I feel sorry that her all time love has passed away and I get frustrated when we talk about things Dad might have done that made me shake my head, and she jumps all over me defending him – but then I know it is her grief that’s talking. As an adult, I lost a father but she lost the man she loved and I have no idea how she feels, so now, we only reminisce about good things and that is fine because that is what she needs. There are things I prefer not to discuss with Mom because a) sometimes I don’t want her to worry about my stuff at her stage in life, and b) there is a strong generational difference of opinion regarding some things but I respect where she is coming from although I don’t think she respects where I’m coming from sometimes – oh well – old dogs, new tricks. She speaks like a 76 year old and is often politically incorrect – again – old dog, new tricks – and those are the times when she talks like she knows all about the topic and is right as right can be – so I take her comments with a pinch of salt, right? But the bottom line is, she is my mother and she has her moments of wisdom when she speaks to me from her heart. I admire the strong faith she has that buttresses my wavering one and when I am in doubt, when I need support; a confidence boost; when I worry about something; when I am faced with a tough decision, when I need prayer, she is there. I can count on her to always be there and I hope when she is gone, I can close my eyes and hear her voice and hear what she would have said to me so that I can right myself. She gave me the strength that so many admire and some, deep down inside themselves hate about me all at once. She told me from the moment I could understand words, that I was beautiful on the outside and exquisite on the inside. She is the reason I have so much compassion and the reason I have no fear of the stuff of life. There are things that make me scared but nothing that scares me enough to quit. She is me. I am her, I am Dad. I already see myself in my children. I know like me, their mother frustrates the hell out of them and I see them roll their eyes and I notice when my opinions bounce off of them because they are too strong. I might see myself as a watered down version of my 5 foot maybe 2 inch powerhouse mother but to my children, I am her.

I can do a better job of being a daughter – we can all be better adult children to our adult parents. If you think you are a perfect adult child, you are a hypocrite. If your adult parent does not make you sigh and shake your head, you are a hypocrite. If you think you are drastically different from your parents, you are in denial – wake up. And if you think you do things better as a parent than your own parents did because you have read some new age bull-shit parenting books, you’re a damn fool. If you are lucky to have one or both of your folks around, put your arms around them and be thankful for them and in some way show them how much you appreciate them and all they did for you. If your folks were a disaster and they messed you up royally, find a way to forgive them, if you can, for your own salvation and sanity. Forgive and free your soul. Remember, you are going to be an adult parent to adult children before you know it. What treatment would you want from your adult son or daughter?

So … thank you Mom, for irritating me, harping on me from the time I could talk, showing me how to do everything from run a house, mix a drink for your guests from the time I was 4, to holding a job, and being amazing at the best job, in a cynical world that views being a good wife, mother and life partner as an underachievement, even though we all know that the problem with the world is that work takes way too much precedence over family and many people have no choice but to let it. Thank you, Mom for banning me, for vexing me; punishing me; kissing me and hugging me; thank you for telling me when I was being an ass and telling me when I was wonderful. Thanks for the confidence and bravery you instilled in me and the pride I see in your eyes when you look at me and mine. Thank you for what you still are able to do for me. You drive me crazy and you make me laugh. Thanks for coming on this trip with me and being so game to do whatever came up next. That was very cool of you and I will never forget that. Thank you for still ever so subtly showing me the way. I am you in so many ways and you know what? Nothin’ wrong with that at all.

~ For my mother, Angela – Thank you. Love you. ~

Leave a comment Posted on July 30, 2016July 30, 2016 autism, Uncategorized

Seven Months to Fifty: Lone Rider.

I need a new mountain bike. I went for a ride yesterday and I could hear and feel that it is time for a new one. It’s been a faithful friend over the years though. I have had her since I lived in Brockville, well before kids were even a thought in my head. But second the boys were old enough to ride without training wheels, that was the bike I used to teach first, Adam, then Logan, how to ride in the street and along the trails. Yesterday was the first time since they were born that I have ridden alone. They still do these sort of activities with me if they feel like it but they are teenagers now; a far cry from the ages where this sort of thing was part of our day to keep them active, teach them things and to make them nice and tired by the end of the day.

As I rode along the route, I remember stopping at the bridge with them, taking the time to look at the people fishing and looking at the large heron we used to see perched on this massive rock in the middle of the river (Wonder where he’s gone to? Wonder if he is still alive?)

I remember Logan’s endless questions and non-stop chatter and Adam’s intense stare as he quietly took in everything, building a massive vocabulary in his head without uttering a word until of course, we rode under the bridge where he would join Logan and yell “ECHO” and laugh until we were clear of it. I yelled “ECHO” yesterday too, for old time’s sake irregardless of the stares. As luck would have it, I rode under the bridge while the train was crossing and I remembered how fast Logan would pedal from under there because he was always scared of the loud noise of the wheels on the track above and was concerned that the bridge would collapse under the weight of the train (“and fall and qwash our heads Mummy!”). Then, because we had Adam with us, if a train was crossing, we had to stop in the pothole laden parking lot of the yacht club to watch each car go by until they were out of sight. Autistic people are flabbergasted by trains while their younger “regular” brothers like messing around with the gravel and mud in the potholes much to my disgust (there was never anyone dirtier than our”Pig Pen”, Logan James).

Closer to the marina’s boat launches we would often stop at the Duffer’s counter for an ice cream or a freezie in spite of the dead-fishy smell.

Logan had an eye for locating dead fish and depending on the time of year, he had an eye for large mating fish who’s bodies would emerge out of the water, splashing wildly as their bodies tumbled around like laundry in a clothes dryer. This caught the attention of every child on the path which led once again to Logan’s most frequent question “How come those fish are fighting? What are they doing then if they not fighting Momma?” followed by “But why?” At the middle of the trail, there’s another bridge which is a perfect spot for watching the turtles dive off the rocks and into the mossy water and on the other side you could look out onto the bay and see a family of swans as they swam by marveling each time we rode down there at how quickly the babies grew.

A few steps away is the playground where I always promised them we would stop so they could play on our way back from the end of the trail where they would practice skipping stones at the rocky beach near the rowing club. After the thousandth rock was skipped and they exhausted themselves at the playground, they would gripe about having to ride home, but they did anyway.

Our bike rides to the waterfront would take about two hours when all was said and done, three if I ran and they took their roller blades or scooters instead of their bikes. Yesterday the ride was part of my exercise program. I was able to ride in high gear the whole way there and back in an hour. For the first time in a long time, I only had to look out for myself on a ride. I didn’t have to shout out directions, or reminders to look both ways before walking our bikes across the street. I did not have to worry about drivers seeing them or them paying attention to the traffic signals. (And to think I sometimes took other people’s children with us. I must have been some kind of sucker for punishment!) For the first time, I did not have to yell at 8 year old Adam to slow down or tween Adam to keep up. I did not have to sandwich a highly distracted Logan (at every age until he was 11) between his brother and me as we rode along the path. I did not have to remind anyone to stay to the right and watch for pedestrians (though I did have a chuckle as I recalled a very blunt Adam not using his bike horn but preferring to yell, “Move out of the way, old people” as he rode past them on the path, hands behind his head like a circus act …and me with the disclaimer “Sorry…he’s autistic”) Yes, for the first time since I became their mother, it was just me on my bike and it was kind of strange but nice … and it was relaxing and it was freeing, yet quite nostalgic now that I think about it. I was alone but not lonely because as I rode past each of our “spots” I could see them with their big colourful bike helmets on,

their Hot Wheels sunglasses and their Ninja Turtle water bottles, I could hear them too, “Look at this Mom!” “Whoo hoo! I jumped it. and I didn’t die!”

“Push me harder mom! Want swing higher, please, Mom!” “Mom, come quick, Adam fell down!” “Mom….Logan…it’s crying. It has a bleed!”

Were all these moments that long ago?

They are young men now and so much has changed and they have changed me in many ways. I remember feeling so tired just keeping them busy, teaching them, raising them and more specifically trying to enhance Adam’s life and give Logan the most “normal” life we could give him. I remember wondering how long it would be before they could do more for themselves, be more independent and of course, if Adam ever would be independent enough to do anything on his own. It felt sometimes their childhood and their helplessness would last forever yet once they reached their milestones I never noticed right away because I was caught up in the next issue or phase I had to get them through. But suddenly here they are now; capable, independent, happy (with the most interesting personalities and senses of humour) and I don’t know where the time went or when they got so big and tall. It was hard raising these two, and it was joyful, it was tiring but it was and still is worth it.

When Adam was diagnosed Tom and I made the decision to do all we could to help Adam and keep our family whole. I sacrificed my career to stay home with my children for as long as I could. Even when I went back to work, it was on a part time basis and even now that Tom has established his own business, I still work very flexible, part-time hours. It has been and still is my pleasure to have made the decision I did. I was here for every first, I was here for every tear, every bloody nose, skinned knee, very lump, bump, fight and every triumph. If Adam was not autistic, I might have very well missed out on all of what are now the most cherished moments of my life. I was here for them then as I am now because I believe it was and is important and worth the sacrifice. I still feel that they need me to be available. Not that I want to micro manage them, but I want to be here to lend my support during these teen years on the days that are absolutely shite and to be there to high five them on the days when something awesome happens. Conversations in a day or a week occur less frequently now, but when they do, they are long and in depth because there is an openness among all of us. Logan is comfortable speaking to both Tom and me and he trusts what we have to say even when he feels he has to be objectionable. Adam is still a man of few words, but over the years he has learned in all his independence that he needs our help from time to time and seeks it whenever he can in the best way that he can. He does not like long conversations, and the three of us respect that but still do find ways to bring him out of his shell verbally.

Logan is a typical 14 year old guy and is the best teacher Adam has ever had when it comes to him fitting in and has been so crucial in helping us recognize what in Adam’s demeanor can be classed as puberty and what is autism. Looking at these photos, and many that we have taken over the years, makes me realize how much they have done together and how close they are in their unique way…Logan, the mouthy self proclaimed big brother, Adam, the silent, thinker who adores his brother and sees him as a best friend. I used to worry that the autism would alienate them but they spend a great deal of time together and I think there is nothing they would not do for each other. And as Adam gets older, he is showing more compassion for others especially Logan, and does not like it and actually feels badly when something has upset his brother. It is the sweetest thing I have ever seen from Adam, whose condition makes regular and appropriate human emotion almost impossible for him to understand or display.

Adam has given the rest of us in this family a special ability. He has taught us how to speak in ways that he could understand, do things in a way that he might be included and to think outside of the box pretty much for everything we need to accomplish with him. He has taught us how to help him be successful while challenging him with the same high expectations we have of ourselves. Knowing it is important to speak to people, Adam has been practicing the arts of texting and conversation and he has some rehearsed phrases and sentences that he knows are effective in helping him get what he wants. Lately, he has taken to coming up with great ideas and usually they are great ideas that benefit him. Every week when we go for our ice cream treat, he is insisting we go inside the store to practice placing his order and paying for it.

He’d say, “Hey, Mother! I know! How about we go inside the store and get the ice cream there. We don’t have to do the drive through today!”

He is so insistent and so passionate about this that it is a joy to watch him at the counter, his bank card in hand, shouting his order to the cashier who might come away a little bit deaf after being exposed to his loud deep voice but hey, we’ll work on volume in the fall.

Now that he is a teenager, Adam and I have a musical bond. He is my in car DJ, switching between Hits 1, The Pulse, and Pop 2K finding all his favourite tunes. We chat briefly about the song, who sings it and why we like or dislike a song. On long drives, I get a kick out of looking at him out of the corner of my eye as he air drums or when we both start giggling when we catch ourselves miming and bobbing our heads to the beat of song we enjoy. When I sing he tells me how terrible I am and when he sings I tell him how wonderful he is to which he promptly replies, “Thanks, I know,”.

I have not been perfect with them by any means. I have made many mistakes as a mother and I am just as flawed as the next person but I do have and appreciate my special connection with each of my boys. Now, I think a proverbial torch has been passed from me to their father. They like going to the movies with him, they like going to Canadian Tire (a hardware store and then some) with him, like going fishing with him and Grampa when he is feeling well (Adam mostly likes to drive the boat)

and they like going to the gym with their dad too. It’s absolutely a man thing because I am politely not included and it’s perfectly fine. When it comes to getting their uniforms for school, they want to go with him because they are more comfortable fitting on the different sizes with him there as opposed to MOM being there and making it awkward much like how they prefer to go underwear and razor shopping with him too. It’s nice to see their man bond with their dad but I will admit I do miss their little feet, their little shoes, their

scabby elbows and knees, all things Thomas, Star Wars Clone Wars, WWE,

YTV, Teletoons and when Spider Man and Superman were like God to them.

I miss finding them asleep in their tent; I miss the stuff in their pockets like a toy car, a rock or some dead bug. I miss dirty hands and faces and their over-sized heads … sometimes …. many times…. all the time.

Their childhood went by quickly in my opinion but they still have some time for old Mom and they have their memories that’s for sure and it’s really nice when we look back at the photos Adam remembers because we often wondered if he did at all. They are almost men now and as bittersweet as it is to say goodbye to their childhood, I get to watch the best part now. Where will their path lead them? Whatever will they become? Time will tell and hopefully their father and I will be here to see it all unfold for years to come. But for now, maybe I’ll start looking up bikes on line…see what’s out there that this Mom of almost 50 will enjoy riding … alone.

Leave a comment Posted on June 26, 2016 Uncategorized

Eight Months to Fifty: The Significance of the Cirque Bag.

The thought provoking bag.

This is my bag.

I like this bag and I hate this bag. I got it at the Cirque du Soleil store in Downtown Disney a few years ago. My Cirque bag looks like it has many compartments because the artist used zippers to create this design illusion. It isn’t the kind of bag one would use if you need to carry a lot of things with you. With two very small and rather shallow pockets in the front, the only useful parts of the bag are the two compartments on either side of it.

Even then, because the bag is a triangle there really is only enough room to hold a small wallet, my phone, a tube of lip gloss, a small tube of hand cream and a pen. Looking at the bag on the outside, I guess I love it’s soft smooth texture. I still find it quite interesting to look at and that I see something new pop out at me every time I take in the artist’s zany, whimsical use of colours and patterns. And while it truly captures the beauty and mystique of Cirque, it can also frustrate me if I happen to have it when I go grocery shopping and have to get in and out of it to retrieve my wallet. Those are the times the look of the bag is deceiving and I curse myself for not having the good sense to have chosen a more practical bag to take with me when I run errands.

The bag was intended as a gift for someone who was a close friend at the time. She was house and pet sitting for us while we were on our trip because she wanted to use the time away from her “normal” to sort out some stuff in her life. Of all the cool stuff in the store, the bag stood out and I considered it a good gift for her as, like me, she enjoyed unique, artsy and funky things. There was a blue one as well and I was going to buy it so I could have one too but (a) I didn’t want to do the “bestie” twin thing, (b) the blue one was not as bold and (c) the bag wasn’t cheap. You might be thinking I did a not-so-nice thing when I decided to keep the bag but as you read on you will see this bag is more than the story of me not giving a gift intended for a friend. To me, the bag is a beautiful piece of art that captures the essence of Cirque du Soleil which has a special place in my heart from the days when we lived in Montreal and they still performed there. It is a reminder of a great family vacation, a wonderful tropical night and is a symbol of a disappointing friendship that was doomed to fail, now that I think about it. It is a reminder of hurt, forgiveness and inner peace and is a grounding reminder to always listen to that inner voice of mine.

Rose Kennedy once said, “It has been said, ‘time heals all wounds.’ I do not agree. The wounds remain. In time, the mind, protecting it’s sanity, covers them with scar tissue and the pain lessens. But it is never gone.”

If anyone knew pain, it was Miss Rose and as an admirer of hers, I too have subscribed to her observation because let’s face it, the old adage forgive and forget is so far from the truth because while quite difficult when someone has wronged you and hurt you deeply to forgive them, I believe that forgiveness is possible but forgetting is not only impossible but pretending to is foolish. I rather lean toward the saying “live and learn“.

So why was this woman my friend? Fair question. When I moved from Calgary, my focus was on getting Adam’s in-home therapy underway, managing our nutrition and getting Logan into school for the first time and basically raising my family and running a household while Tom worked. He met her at work and thought she and I would hit it off as friends. With the headway I was making with Adam, I didn’t really want to allow anyone new in my life, let alone get close to them but my mother thought it would be nice to have a break from my daily stay-at-home-mom-and-therapist-and-teacher routine. Taking my well-meaning family’s good intentions and against my instincts, I made a new friend and as it turned out, we did have many things in common and did enjoy spending time together. She introduced me to running, I got her practicing yoga. We shared a birthday and a love of the arts but there was always something that I couldn’t really put my finger on at first that made me question if we really were suitable as friends. As time went on, I realized it was her false sense of confidence and her inability to be comfortable in her own skin that never sat well with me. She found the silliest things “cool” and was a self-professed “whatever” girl who was “carefree”, “kooky”, “wild” and “dark”, glorifying herself as a crazy, haphazard mess, much like one might be at age 15. I always thought after age 24, the “cool” thing was working to get your act together as a grounded, well-rounded adult. It was frustrating watching her avoid grown-up life – basic things like being accountable for her work or standing her ground as a parent or not showing up at an event she’d committed to, not caring she was becoming notorious for backing out of things at the last second. She would rather appear helpless than face reality and with all that my family and I dealt with on a daily basis, I was disappointed in her childishness and lost a measure of respect for her because I knew if she made an effort to be a strong independent woman, she could own her world and not have to lean on anyone. I saw her weakness and I was amazed as I was annoyed by it, because she clearly found a way around seeing things through in her life. I blame myself for not cutting the friendship to an acquaintanceship at that moment. It was the right move to make but when I mentioned it to my mother in passing, she suggested perhaps I was being judgmental and that sometimes, though we have our own troubles and struggles, we do have room to be there for someone else. She ended her thought the way she always does with a simple sentence that makes me think – looking at me with those ashy grey eyes she said, “It’s okay to be nice Danie. It’s nice to have a close friend.” So, I kept on.

Unfortunately, I discovered like my Cirque bag, my friend was lovely on the outside and often shallow on the inside. Her sweet and at times convenient naiveté drew people to her and made them want to help her. To be fair, she wasn’t an ogre. I mean, she could be compassionate, kind and generous and she certainly preferred to laugh than sulk even though she had a lot weighing on her soul. But instead of doing something about her life, she chose to sweep every issue, conflict, responsibility and problem under a rug and as things built up and up and up, it spilled onto her children as well. She never cleaned up her messes because she never learned how nor did she want to learn. That took strength and guts and hard work. What she did learn was how to draw attention by portraying herself as a damsel in distress. She would proverbially throw her arms in the air and I would watch in awe as people would flock to her and wrap their proverbial arms around her, giving her advice, lending her their ear (whether sincerely or not) and assisting her in any way they could in the moment because her helplessness made them want to rescue her while giving them a feeling of being superior to her at the same time. Some people tend to like the misery of others deep down inside especially when “the other” has a tinier waist, a flatter tummy and an upright, firm, albeit artificial bust line. When “pretty people” flounder or fail, in some bizarre way it arouses a sense of comfort in some people who are less so. When a proclaimed “goddess” is knocked off a pedestal, suddenly it’s okay for the lowly mortals to not have the prettiest face or sexiest body, allowing the little devil sitting on their left shoulder to smirk once in a while. I was different with her. I wasn’t competing with her; wasn’t looking to have her at my side to be popular nor did I want to rescue her. I like strong, confident and hard working and lighthearted people around me. I wanted her to grow up and take charge. I was taking my mom’s suggestion and trying to be a friend but I made a major mistake. I did not accept her for who she was and when I recognized that she couldn’t take the advice she sought from me because it entailed hard work on her part; when she could not get herself to where she needed to be on her own, I needed to take a step back from the relationship we had much sooner than I did. But much like how I would make my bag work for me; stuffing all the important things I needed in there, ditching all the unnecessary receipts, pens and junk that was taking up way too much space, I made her ditch her habit of putting stuff off or not dealing with issues. I made her step up and be accountable for herself and her family and for a while it worked. But in the end, she was like my bag, nice to look at and only able to hold the bare necessities and not much more. I was wrong in thinking she could be more. I was wrong to think that she was going to turn into a strong independent woman, mother, worker and reliable friend. People can try to change. They can try to turn things around, be resilient and do the very best with what they have and strive for better. We can all dig deeper and rise higher if we want to. Not everyone wants to. Not everyone can. In the end, I learned my friend couldn’t be something she was not and I should not have encouraged her because she failed and did not know how to try again.

In the last year as the flame slowly went out on our friendship, I watched quietly as she frantically tried to preserve her youth dabbling in this, experimenting in that. I watched quietly as her work and things at home unravelled. I said nothing when I heard the rumours then saw the evidence of promiscuity and her unprofessional behaviour among colleagues which included her attempts to poach work. Who she was, that unsure, wild teenager who never grew up, rose to the surface and she was considered by many to be nothing more than a vapid, waste of time and a disappointment to the workplace. The “whatever girl” had nothing left to grasp and in the end all she could do was attach herself to a man (whom she admitted was not her type and one whom she and I agreed was not someone to get involved with until she had her life figured out) and “get the hell out of Dodge”.

When important contents are removed from my Cirque bag, it is mostly an empty vessel. There might be a receipt or two left in it, maybe a pen and a tube of lip gloss but nothing I would be concerned about if it were lost. My former friend and I did share some good times and I miss having someone nearby to do stuff in town with. Many of my friends live in cities an hour or more away from me and it was nice to have company at yoga occasionally or someone to have an impromptu breakfast out with on a weekend but now, in her absence, I’m back to doing what I do when I have the opportunity. I’m back to jumping in my car (mostly in the summer when the roads are better) and going to spend time with women who don’t need propping or fixing. They have their shit together and are worth the drive and my time. In a million years, I never would have thought a friend would give up her family and her friendships for a man. It was kind of like the girl or guy in high school who separated themselves from their friends because they were going steady with someone who was the be all and end all of their lives. There was no goodbye when she left and I have since heard that she’s been back to visit her children? or family? once? …I am not sure. I have had people mention to me and try to show me some of her social media posts (which I politely declined to view) that to them, seem dark and sexual and more in tune with the vibe of an angst-filled 18 year old. I don’t know anything about what she is doing now and I can’t comment on what she is posting and I have no intention of reaching out to re-kindle anything with her. The last communication we had was via text and I let her know then how I felt, that I was verbally ending our friendship and I wished her well wherever her journey would take her. She responded that she did not know what to do or say about my text. She admitted that she was avoiding me because, and I quote, “it’s what I do. I avoid things that are hard to deal with. I’m just an avoider” and she didn’t know what to say to me. Hmm… upon writing that just now, I realize the only thing I really regret is the amount of time I wasted with her. So much had taken place in the 7 or 8 years we had been close – mostly things with her because after a while, it’s apparent that all the relationships she’s had with friends were rosiest when things, ever so subtly, were about her. It makes me wonder if all the times she stayed here, ate here, cried here in my house…the amount of times I fed her children, made them get their homework done, drove them from school only to have her reciprocate a few times in comparison then distance herself and disappear…I wonder if she was my friend at all or if I was just another really convenient pit-stop for her like so many of her past friends were? Where was she when her family and friends needed her? This is why I did not want to open up my life to someone new. This is why I wanted to go with my gut instinct and not get close to anyone else. I can’t blame Tom or my mom for wanting me to not be lonely in this small and boring place but the only good that came of my experience with this friendship was the affirmation that I am best following my instincts every time. I have my friends I am happy to drive to Toronto to see and one I have recently promised to fly to a different province to see. I have my friends abroad – my SJC “sisters” I keep in touch with on line after a 30 year reunion that reminded me that everything I know to be true, everything I was, I am and am yet to be was created during my life in Trinidad and the years we spent together – years that transformed us into the incredibly admirable, strong and courageous women we all are today. I have my dear sister, my mother and my girlfriend in Trinidad with whom I am able to Skype when life here gets on my nerves. I have my wonderful cousins and friends from Calgary and Montreal and a few people I have come to know and enjoy in the area where I live as well. We are not “besties” but people – women who enjoy each other’s company. No drama, no issues no bull shit. That’s how it was before and how I’d like to keep it. No more wasted time on wasteful people.

But as my mother has said to me about all this – we all have experiences in life that help us grow and remind us of who we are. Nothing, she says is a waste of time (I ain’t so sure about that, but okay). She told me not all of my friendship was bad and what is most important for me to remember, is even though what happened hurt and at times made me angry and frustrated, she was my friend, and I did help her and she very much knows that.

I told my friend when I returned from my trip that I got her a box of amazing chocolates in lieu of the bag (why lie?). Though she really liked it, we both agreed that it was the better move as it may have ended up in the trunk of her car with the zippers broken and the material stained. I never told her this but worse yet, because of her “whatever” and “kooky” nature, I might have found the bag strewn on the shelf at yoga just like the way the shirt (one she really wanted) that I gave her for her birthday along with her worn underpants were left there for God know’s how many days (I shake my head thinking of the poor custodian who had to remove her nasty bits). Hmm…birthday present you really wanted carelessly left with your underwear on a shelf…kind of like the friendship I suppose that she tossed aside and let fade. I am aware you can always point a finger at someone but you will always have 3 pointing right back at you. No one is perfect. We are all hopelessly flawed and I have some blame in the failure of this friendship. As I head towards age 50, I have learned many valuable lessons from this relationship. I have gone through the anger and the bitterness where I really wanted to hear that she fell flat on her face. But then there was the lingering of a tiny shred of hurt that has been finally been replaced by forgiveness. When you forgive someone you can’t wish bad things upon them. I don’t want her to fail. I didn’t want her to fail when we were friends and I don’t want her to fail now. I truly hope her “re-do” is a success because she is entering the second half of her life and at some point, she has to make it a better one. That tiny shred of hurt has been the affirmation that the best advice for me will always come from my intuition. I have all I need and there is nothing I am seeking; no thing I want. This experience with this former friend in the end, I suppose, simply confirms I’m good.

For my friend and “word sister” Helen ~ Reading your words about your disappointments and triumphs with regards to your own relationships with others made me realize that admitting I too have experienced the hurt of a failed friendship, doesn’t make me weak. No matter where you are there are people who are great friends and others who are not. Your brave candor made me realize that I’m not above having unsuccessful relationships and that I am not too tough or strong to feel that kind of pain they bring because in life it is better to open oneself to all things ( even the not so good ones) in order to truly live.~

2 Comments Posted on June 21, 2016June 21, 2016 Uncategorized

Gesture of Goodwill Leaves Bitter Taste Behind

As many of you know, we started Adam’s Hope almost 10 years ago. With creative ideas and a lot of time and hard work (in addition to raising autistic son Adam and his younger brother Logan) we have had the honour of helping families in our community affected by autism, help themselves and get what they needed for their sons and daughters. Since March, I have gradually passed the torch to three mothers who have the energy and the drive and the enthusiasm among themselves to keep the charity alive and well so it can continue to service our community. I also have to tip my hat to the families who regularly put on fundraisers to give back to Adam’s Hope and each other time and again, and I hope they continue to do so. While Tom, Adam, Logan and I will still be involved with raising funds and helping out however and whenever we can, it is time for us to enjoy this new phase of our life. Our boys are older, more mature and capable and Adam is going to be just fine and we are now allowed to have a more “normal” family life.

In all the years of putting on events and raising awareness, we have encountered the most wonderful people and while every gesture of kindness has been appreciated, one of the more recent and bigger ones, has been a downright fiasco that has unfortunately left a sour taste in our mouths. The level of disorganization, the lack of proper communication, the insult and rudeness we have been shown by a particular organizing member of a local chapter of The 100 Men Who Care Quinte, has forced me to tell people what really happened. I believe the members – the men who show up to the meetings are very well intended. I believe the organizing committee, (including the one very rude individual), is well intended but they were far too disorganized to get things done in the efficient manner of their counterparts, The 100 Women Who Care Quinte. Now that I have been told that the 100 Men Who Care Quinte is blaming their tardiness and shoddiness on the charity I created with my husband for this community, I am going to tell you and the members of the !00 Men who Care Quinte what REALLY happened.

In late February, Tom and I accompanied our Adam to the National Special Olympic Winter Games where he competed as part of Team Ontario in Speed Skating where he won 2 bronze medals. Adam’s Hope was represented at the 100 Men Who Care Quinte meeting by someone who was a member of our charity at the time, and after a brief presentation, we were the fortunate recipients of $11,800.00. We would have preferred if Tom made the presentation at the 100 Men Who Care Quinte meeting but this particular and now former member of Adam’s Hope was over zealous and adamant that we should present in the winter meeting. Anyway, we were chosen and we were happy and very grateful as this money would help get autistic kids to camp, help parents pay for respite and therapy and many other things in the summer which is a hard time for parents, as the kids are home from school and finding activities that they are able to do is difficult and expensive. This donation also freed us from having to put on numerous fundraising events in a summer when we were changing hands in the charity. So this all started off as a really good thing. Because we were away, I am not sure how the news got to the local paper as quickly as it did ( I am not a fan of immediate publicity until things are settled) but I started getting calls from families, putting in their request for assistance. I assured them as soon as the money was received (and I told them to give it at least 3 weeks) I would happily help them out.

Tom began corresponding with the organizer by e mail (as there is no contact phone number) shortly after we heard the good news, thanking the 100 Men Who Care Quinte for their generosity. Knowing families would need to make down payments for summer camps and services etc., Tom asked when Adam’s Hope could expect the money. He was told to give it a week or so and that he (the organizer) was on top of it. March became April and I not only had calls from families but from 100 Men Who Care Quinte members who wrote their cheques to Adam’s Hope and wanted to know why we have not cashed them as yet. We explained that we did not have any cheques in our possession and that we were still waiting. I also had calls from members wondering if I would write them a receipt, again for donations I did not yet have.

Since it was taking a long time to receive the funds and any real information from the 100 Men Who Care Quinte, and we were receiving all these phone calls, we were concerned that something had gone wrong. Tom had sent several e mails that were not responded to by the 100 Men Who Care Quinte. He has also received a couple very terse ones that say “I’m on it!” and suddenly we began to feel like we were badgering them and that we did something wrong, when all I had been doing was fielding calls from people looking for assistance because they saw the article on the news paper. I was fielding calls from people who wanted me to cash cheques I did not have, and people who wanted to know when they would receive a receipt from our organisation. As you can see, we had very little feedback from the 100 Men Who Care Quinte and nothing to offer the families and no answer for donors. We were waiting. And Waiting…and WAITING. Charities don’t function on promised money. The money Adam’s Hope raises is immediately distributed and used to help people with autism because the alternative is endlessly long waiting lists. There was nothing we could do so to stop my phone from ringing, so I posted on Facebook in May (yes we had already drifted into the month of May) that I had not yet received the money from 100 Men Who Care Quinte and as soon as I did I would be able to give people the answers they were seeking.

Soon after the post, one of the organizers finally gets in touch with Tom at 9:30 pm. He calls our house and got into a screaming match with Tom to the point that Adam could pick up on the tension. He started acting out asking “What’s wrong?” and “Why is the man in Dad’s phone yelling?” This man kept going on and on how he told us we were going to get the money soon and was angry because my post made them look bad. Well, Sir, don’t do things to make yourself look bad. He kept yelling “You’ll get your money!” Well, Sir, it’s not our money, it’s money the 100 Men Who Care Quinte was highlighted for in the newspaper that they were donating to Adam’s Hope. Because they could not collect all the cheques in a timely fashion, because they did not have a list of the donors names and addresses so that Adam’s Hope could write receipts, because of their lack of organization, The 100 Men Who Care Quinte is the only entity to be blamed for making themselves look bad. This man would not let Tom get a word in edgewise on the phone and when Tom was able to, he reminded him very firmly that we were the ones trying to communicate with him and he did so extremely politely every time. The organizer said we were badgering them (only after just 3 polite e mails in 2 and a half months and getting no response). So Tom told him if he addressed our concerns with proper communication there would not be a situation where there would be a shouting match over the phone.

Since this gong show of an experience, I have been told by 100 Men Who Care Quinte members that they still don’t have receipts from the first 4 donations they made to other charities who received their assistance. Some members who paid cash also do not have receipts from 4 separate donations. Why is that? (Disorganization…that’s why) Charitable receipts should be given promptly to donors as they can use them for income tax purposes. Some members told me they had to keep making sure they had the funds in their spending account to make sure the cheques they wrote (not just to Adam’s Hope but to other charities) through the 100 Men Who Care Quinte organization, would not bounce. After any fundraiser I have ever had, I deposit cheques within 3 days of receiving them and I issue receipts quickly and any receipts I might have missed I e mail to the donors the day I get the reminder that they are still waiting.

Now I have been told that The 100 Men Who Care Quinte is telling their members that because we were re-structuring a new committee, we caused the delay for the receipt of funds. That, I assure you is not true! The new Adam’s Hope Committee member was called by the organizers of the 100 Men Who Care Quinte on the day she was at the bank assuming control of the charity’s finances. She told him she was not able to take the cheques from him that day but would within the the next few days (we planned earlier in the year to transfer the account control in early June). Considering we’d been waiting since March, a few days really made no difference at this point. The organizer also told her that they had not received all the cheques and the was still short about $1000.00. Incredible, isn’t it? After all that time, they did not have all the cheques?

So to be very clear. Control of the account regarding the old and new committee for Adam’s Hope happened in early June as planned. The account was always open and able to receive donations as it had always been since 2007 so it posed no involvement in the delay of the receipt of funds. The 100 Men Who Care Quinte had from the month March to gather the cheques, give them to our charity, along with a list of names and addresses so that Adam’s Hope could issue receipts, at which time the cheques would have been deposited. It would have been nice to get the cheques in a timely fashion, so that families would have been able to secure their spots for their kids in the out of town overnight special needs camps, but even if we couldn’t and they communicated to us that they were having problems collecting the cheques I would have been able to communicate that to the people who were phoning me and our charity would have made arrangements to raise the money needed for security deposits for camp. Communication was VERY POOR.

In closing I would like the very rude organizing member of the 100 Men Who Care Quinte to know this – While I thank your organization for the kind gesture, I will not tolerate your rudeness quietly. You did not gather the cheques in an efficient manner. You did not communicate well with us (we have all the e mails to prove it). You did not give us a list of donors and their addresses so that at least we could mail their receipts. You had no right to call my home and get into a shouting match with my husband when you were the one who was disorganized and wrong. Sir, you actually were raising your voice and arguing with a charity… a charity you raised funds for. You created a tension in my household with your phone call that put my autistic son out of sorts. You had no right to be disrespectful to us. Why should I field all the upset calls you generated by your disorganization? I had no choice but to let people know I did not have anything from your organization and until I did, I could not help them. You Sir, made the 100 Men Who Care Quinte look bad by your disorganization. Perhaps your chapter needs to look to the 100 Men Who Care Kingston, who delivered a cheque to a charity they raised money for last December within 3 weeks of the event. Look to your female counterparts the 100 Women Who Care Quinte to see how efficient they are. Adam’s Hope is not ungrateful for the generosity but we did not ask to be chosen and we certainly did not have anything to do with your inability to organize things efficiently. Do not blame your shortcomings on our charity which has helped this community for almost 10 years with the simplest of fundraisers put on by parents and family and friends of autistic persons. This has nothing to do with our restructuring and EVERYTHING to do with your chapter being well intended and trying to do good in the community without having the organizational skills to pull it off. When organizations get popular and grow suddenly as yours has, being efficient is imperative. Looking good for doing good, is always a popular attraction but the true do-gooders do it right by being organized and efficient and apologetic when things do not go as planned. While the money will not be able to help our campers this year, we still will use it all to assist families affected by autism in our community in many other ways. Unfortunately what started out as a warm feeling in our hearts has turned into disappointment. I want you, the very rude organizing member of the 100 Men Who Care Quinte to apologize to my husband for your discourteous phone call and poor communication skills. I hope you step down from the organizing committee of 100 Men Who Care Quinte before you ruin it . You are certainly in the wrong role. No one speaks to my family like that and gets away with it. I will never go quietly when insulted and as much as this money will help others who really need it, I sometimes wish we never chosen as recipients. Do not try to tarnish the good name of the charity we founded and named in honour of our son. Adam’s Hope may be a small charitable organization but it has done and will continue to do good work in this community. I suggest your organization re-group and get organized so that you can do the same. All you had to do was tell us you were having a delay in collecting all the cheques and we would have been able to give people answers. All you had to do was communicate with us and this would have not become unpleasant.

This is my blog. This is where I state my opinion and where I get to state clearly what I know happened.

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