Human-Kind

My son was not well at school yesterday.  When his teacher called to tell me he was feverish and sleeping in the quiet room, my heart sank.  It sank for him because yesterday was a day of the long awaited fulfillment of plans.  He was waiting for almost a year to go to a concert in Kingston with his support worker and friend, Lindsey, and the rest of the family was heading to Toronto to see a dress rehearsal at the National Ballet for my birthday. But that’s family life. Things are planned and plans change and we chalk it up to bad timing or bad luck or what have you. The James family day of artistic appreciation was taking a big hit.

My husband, eager not to disappoint (Tom is big on birthdays and hates to disappoint us) asked me to call around and see if (a) we could get Adam to a doctor to maybe have him quickly checked out (Adam is autistic so on the rare occasion when he is ill and it seems significant enough we like to get him checked out as he sometimes does not explain his symptoms properly) and (b) see if someone could stay with him while he rests in bed or (c) see if someone would go in his place and he would stay with Adam.  Willing to pull the plug on all of it (I am not big on making a fuss over my birthday and I am okay with disapointment), I compromised and called around to see what I could do.  The doctor said it sounded just like a cold was coming on or a flu and if he was the same the following morning to bring him in. Everyone else I called was going to this concert so I decided to fold and called his teacher to tell her Tom would pick up Adam from school and bring him home.

Well, wouldn’t you know it, Mr. Adam, now 18, insisted on coming home on his bus.  He absolutely did NOT want his father to pick him up from school. He was willing to take an Advil and come home on the bus AND he was going to the concert. I could hear him vehemently stating his case, so to avoid a lengthy argument, we let him come home on the bus. By the time he got home, he had a big speech all planned that involved telling us in every which way he was going to the concert.  He was not burning up, he had a bath and as per the doctor’s suggestion, I gave him a Tylenol to go along with the Advil he’d had a bit earlier. He was perked up. He dressed as per Logan’s style suggestions in a light t-shirt, with a bluish hoodie, a black boxy jacket and his grey joggers that Logan gave him for Christmas. He ate a sandwich as a snack and showed me he’d eaten all his lunch at school and he was listening to the band he was going to see through his headphones.  He was going and THAT WAS THAT.  When a child who has never really been able to decide much for himself looks you in the eye (a thing rarely done by autistic persons) and puts his foot down regarding his own life, you have to respect it.  I had to respect his judgement.  He is 18 and is finally able to do what we have been waiting on for so long which is for him to express himself in a clear and well thought out fashion.  Against all of my maternal instincts, I agreed with his father, brother and teacher and with Adam and he went to the concert and we went to our show. After all, I remember taking the Comtrex back in the day when being at the party was of utmost importance to me. It was not easy to get to go out when I was younger and living at home with John and Angela. It is the same for Adam. It isn’t easy for him to go do a lot of stuff on his own and I can only imagine how frustrating it is for him to be stuck with Tom and Daniella when he knows people his age have so much more freedom. Mind you,Adam has a lot more freedom than most people with autism his age but there is always room for more because he has had a big taste of it , so who am I to stand in his way when I opened this door to his possible freedom for him? I have to respect his needs and decisions even if they are hard for me to do so. Should he have stayed home last night?  Most likely, yes, but I am not him and he REALLY wanted to do this and he got to do it even though it was miserable. He had full control of his life for a night which is after all, the point of growing up, isn’t it?

When Lindsey checked in with me, everything was good. She sent a photo of them smiling. They had eaten and had arrived at the venue. There was nothing to worry about as he was fever free and was smiling and happy. Around 7:30 we were involved in something going on before the performance when Logan noticed the Snapchat on his phone going off. He chose to ignore it at first but the Snaps kept coming. It was his friend from hockey and school whose mother also happens to work with us. Checking out the messages, he smiled and said that his friend just said he saw Adam heading into the concert.  A bit later on, the same friend Snapped again to tell Logan that he wanted him to know that Adam was throwing up in the tunnel of the arena and that he wanted to let him know in case his helper did not tell Tom or me. Of course, Lindsey had her hands full at the time and did text me a short time after and said that all was okay and though she offered, Adam was insisting he stay as long as he could and that she would pull the plug after a few songs.

Here is where the human kindness comes in. We (mostly I) worry what will happen to adult Adam when we are not around to look out for him. Not yet capable of being 100% independent, Adam is probably at around an 80% capability of independence right now and will to my best guess top out at about an 85%.  He may surge to 95% and prove me wrong, which will be fantastic but from what I know now, he will be able to live semi-independently, in that he may need support when it comes to getting to places on time, being mindful of his schedule and with his purchasing ability to a degree. I do not have this worry over Logan. But what this story proves to me, is that I have less to worry about than I thought because some of the people in this little town which I moved to kicking and screaming (I am more comfortable in cities), may not be perfect for me but is is for Adam. I have had neighbours and friends call me to tell me that they had just seen Adam walking over at place X and they wondered if that was okay and if I knew he was out of the house. At the time, Adam was on his way to work or practice and they had not known that he was at that point of independence and it was very reassuring that people (adults) do know him and want to make sure he is safe. What was the icing on the cake for me last night was that it was a soon to be 17 year old youngster who saw Logan’s brother and not only was happy to tell him that he had seen Adam, but was concerned enough to contact Logan again when he saw that Adam was not well. In an age of Millennials who barely speak words, (which is ironic because one of the biggest goals with Adam was to get him to communicate with words)  Tristin, at 17, showed the human kindness and concern I hoped Adam’s peers would show towards him and us. So many people turn a blind eye. So many people keep to themselves. So many people do not make time to connect with good friends, old friends or make new friends, it is nice to see that a teenager – someone who is a part of the most criticized group on the planet – was able to show such basic human kindness and therefore maturity which has been lost on many Millenials. Tristin used the same device teens are criticized for using excessively, to Snap his friend and let him know about his brother because he knew it was the right thing to do. The human kind thing to do.

Lindsey was as usual her wonderful human kind self.  Some of the support persons we had when Adam was younger would have bailed and brought him home and insisted we come home or would not have agreed to take him and give it a try. I already was loaded with guilt and “if only’s” and she did her best to put me at ease. She is also very keen on treating Adam age appropriately and respecting him as a young adult who can make wise decisions and choices. Adam tried to stay for a few songs but he ended up sleeping with his head rested on her shoulder before she woke him and skipped out of the venue and brought him to her home where she put him to bed. She told me how sorry he was that he got sick in the tunnel and that everyone was looking at them (which is an extremely rare thing for an autistic person. Since when does Adam care what people do or think?) Lindsey told him he did nothing wrong and it just happened and he was not to worry about it or worry about the people who were watching because it was none of their business, to which Adam replied “Yeah, $%^% them!” in between hurls. (Well he is 18, he has ears, has internet access, loves you tube and goes to high school – hence the answer, lol)

How fortunate and blessed we are to have put together such an amazing team for Adam in what are the most important years of his life as he launches into adulthood. We had been exposed at times to fantastic people who personally supported Adam as a child and many who were fabulous in the rough teen years, and now on this springboard upon which we stand as we prepare to let the world have our boys and let them fly into this unknown (to them) phase of life called adulthood, I couldn’t ask for a better team.  We have a great young male role model in Sebastian. In Courtney, we have a perfect just -a-year-older peer who teaches Adam how to be and in Lindsey we have a friend who is practically family. She has been with Adam and Logan from the time they were 9 and 7 when she was their teacher, then their tutor and now just a great support worker for Adam and I trust her so much that she is included in much of the decision making when it comes to Adam’s future.

There is so much to still worry over. The world will never be ideal no matter how easy it is for us to make it ideal for everyone by just acting out of love and human kindness. It is reality and we must accept it because we aren’t doing enough to change it. My worry however, is far less than it used to be because in this little town in which I have not found my groove, there is a groove for our Adam. As much as I love the city and Adam enjoys being in the city, a groove would have been much harder to carve out for him there. In fact, it would have been close to impossible and it would have been frightening to think of all that he would be vulnerable to in such a large, busy environment. I know my younger child will fly far from the nest. He has a lot of me in him and he will not settle in one place for a very long time and I understand why. But I am satisfied that my older child will thrive in an environment that is home to kind humans of all ages who are decent and good. The stories about Autism are not always uplifting. Autism is difficult. Autism is puzzling. Autism is isolating to the person and their family. Autism can feel like a life sentence that no one signed up for. Today, my story is one of hope for not just people with autism, but for all people. In spite of my weariness. In spite of my worries. In spite of my frustration. In spite of all the road blocks in this journey with Adam. In spite of my life, I have hope in humankind and this 51st birthday will be one to remember as the birthday when I felt in my heart the kids are going to be just fine.

 

 

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The Little Doll and the Giant Grasshopper.

Once upon a time, in a small town, that fancied calling itself a city, there was a beautiful friendship.  It didn’t start off smoothly.  In fact, it was the most unlikely of friendships because he was a giant grasshopper and she a tiny doll, controlling her portion of the world in a magical throne. Sitting on her special throne, she breathed in the cleanest of air through a minuscule tube, discreetly placed beneath her tiny nose. At 6’2″ and 150 lbs., the giant grasshopper bounded about, usually with a big smile on his face, happy to be alive in his own world; tolerating (yet not completely conforming to )the world presented to him. Energy abound, always moving quickly, his long limbs propelling him, one of his unique powers was speed . His job was to race on the track in the summer and on the ice in the winter with the best of all of the other specials (and sometimes regulars) like him and he did well, bringing back to the hub, ribbons of red and blue and medals of bronze, silver and gold. The giant grasshopper also had natural rhythm and could pound out head nodding and foot tapping beats that kept the other specials in the hub moving while they worked….when the drumming didn’t bother them that is…and if it did, he would switch  to humming and singing popular tunes they all knew and loved.

In spite of his wonderfully unique powers, the giant grasshopper struggled to make friends in the regular world because he couldn’t come up with interesting conversations. He knew in his head what he wanted to say, but it didn’t always come out of his mouth just right and he chose to say very little. Still, people tried to get to know him, tried to speak to him but it was the specials and their subjects in the hub who loved him enough to accept him as he was – a giant grasshopper of few words but with with actions that spoke louder than anything anyone could ever say.

The first day the giant grasshopper was accepted into the hub, he frightened the little doll to tears with his long limbs, big movements and loud quirky noises. For weeks she cried and complained that he made her afraid and for weeks he didn’t understand what he was doing wrong but the loyal subjects who worked for the specials did not give up because they knew the tiny doll and the giant grasshopper were good for each other and they were determined to help them become friends. By the end of their first semester together, the loyal subjects had the most unlikely of friends sitting beside each other, eating lunch. They rode the same chariot to the hub every morning.  On breaks, the grasshopper was even seen standing still ( something that was very difficult for him to do) looking over the doll’s shoulder while she controlled the world through the game she was playing on her tablet.

In time, the tiny doll got quite used to the energetic, musical grasshopper. She became so comfortable having him around, she even ventured out of the hub to help the regulars at the local food bank. Though she hated having to take her magical chair on the lowly city bus, she would go in good spirits if her friend the giant grasshopper was by her side. If he could not go, neither would she and if anyone tried to force her to go, they would be subject to her well-honed power of feist. Time passed and the unique bond between the giant grasshopper and the tiny doll grew stronger. When she would not eat, the grasshopper would sit beside her and simply say “Eat your food,” and she would. When she wanted to keep talking, even though he didn’t seem to be listening, he was as he was just happy to be sitting among the doll and the other specials. When his brother, the locust, taught him how to text, the grasshopper invited the tiny doll to join him and his other special friends for dinner at a local restaurant or to join them for an hour of bowling. Time and again, the little doll refused but one day, she said she would come to dinner if he promised never to ask her to go bowling again. She came to dinner twice and and giggled and smiled through the entire meal, the grasshopper fascinated by her her pretty painted little fingers and toes.  Whenever the doll was broken,(i.e. crying) like a true man, the grasshopper made it his job to fix her.

“She’s upset. Why is she crying?” he once asked.

“She does not want to go to the dance in the gym,” the subject replied.

“Okay. Look…just… Dance with me,”

Tears ceased and the problem was solved and another year in the hub came to an end and the specials and their unique powers went on break. The little doll was old enough to move away from the hub and live full time in the world of regulars. She played unique powers baseball and she attended unique powers dance class and though she did not see the grasshopper everyday she texted with him and came out to dinner whenever she could. The giant grasshopper had gotten used to the little doll’s absence from the hub and not seeing her on the chariot that transported them to the hub every day but the texts helped to keep them connected and he was thrilled that he was going to get to see her at his upcoming 18th birthday. She was the first name on his guest list and though he did not have any great words to say to her, he was looking forward to spend time with her and the other specials and their unique powers as they shared ideas on how to teach the lowly regulars how to properly run the world.

The day the giant grasshopper and his brother the locust were planning to text the specials about his birthday dinner, their mother found out that the little doll had died the day before. Her most unique power was her most dangerous power and though she was successful keeping it at bay, it snuck up on her and with no time to put up her defenses, it overpowered her and took her to Heaven.

When the giant grasshopper’s mother told him what had happened to the tiny doll, she was not sure how he was feeling about losing his friend.

“Do you remember Grandad Grasshopper?” his mother asked. The grasshopper nodded. “Tell me what happened,” she said.

“He got sick.” he replied, looking out the window.

“And?” his mother urged.

“He died,” he said, looking her in the eyes.

“Yes, he did. You know your friend the little doll?”

“Uh huh,”

“Well, son, she got sick and she died,”

“Oh.  She died?”

“Yes. Like Grandad Grasshopper, she got sick, she went to the hospital but they could not fix her and she died but just like Grandad, she is sleeping now.  She’s sleeping forever and is in no pain. She’s not sick anymore and she is in Heaven,”

“With Jesus?”

“Yes”  The grasshopper listened to his mother’s words, nodded and said,

“Okay, thank you. I’m going to my room now. I’m good,”

From time to time over the next day, the grasshopper would ask “The doll is gone?” or “She died? The doll is dead?”  and his family and his loyal subjects would confirm that she was indeed gone. His mother told him that there was an opportunity for him to see the doll one last time and say goodbye and the grasshopper decided that was a good idea. When his day was done at the hub, he changed out of his uniform into  a nice shirt, tie and jacket and went to where the doll was resting. He saw her picture, he signed the guest book and waited in line to see his friend. Being taller than everyone in the room, the grasshopper saw her lying peacefully in her casket.

“There she is,” he said. “She’s sleeping. She should wake up,”

“She can’t, son, remember?  What happened to her?” his mother asked him.

“She’s dead,”

“Yes,”

“Dead, dead…forever,”

“Yes, she is asleep forever but she is…”

“She is in Heaven like Grandad Grasshopper, with Jesus.  Are you okay?” his mother asked searching his face to see what he was feeling. The grasshopper said nothing but gave the thumbs up. As they approached the doll’s parents, hugs and words of kindness and sympathy were exchanged and the grasshopper shook hands with her family members and nodded when they thanked him for coming. He stopped and stared at her, his his face unreadable and he moved along the line of people to the very end where he took a seat on a nearby sofa. Hugging a cushion close to his chest, he buried his head into it then lifted it, revealing a brief smile.

“What do you want to do now? asked his mom. “Do you want me to take you home?”

“I want to see her again,” and he rose, looking even taller than he was, walked to where the little doll lay and knelt beside her. His loyal subject told him that he could touch her if he wanted  and he did, gently placing his large hand on her tiny one. He paused for what seemed like an eternity then he sighed and said, “Well…see ya…I love you…I’ll miss you,” He got to his feet, turned and left the room but not before taking the memorial picture card of her and gently kissing it before putting it in his pocket.  Noticing his mother’s face, he asked,”You okay? You look sad,”

“I am,” she replied “Thank you for asking. I am sad but I will be okay. How about you?”

“I’m good,” Let’s go home,”

For a few hours after the visitation, the giant grasshopper would randomly tell his mother, father, brother and loyal subjects that the doll had died. He would get reassurance from them that she was never waking up and that she was gone forever but she was okay because she was in a better place everyone called Heaven.  The photo of them at the food bank and the card he took from the visitation are in a visible place in his room and I suspect, in spite of the challenges of his  unique powers, he does feel deeply and he will always remember his friend, the little doll.

 

 

The Power of She

~To my Trini She’s as we settle into phase 50 ~

 

 

She turned 50 and She is glorious! She is remarkable. She is unflappable. She has a strong sense of self. She has never felt so much power. Power which built up inside her over the years. Power She can use to fuel good. Power She can use to ignite change. She is educated and experienced. She works hard and She works well. She has an eye for detail. She is efficient. She is creative. She doesn’t stand for nonsense, knows what to take seriously and what to ignore. She is a rock. She can be relied upon. She will boost you. She will put you in your place.  She will can get you back on track. She has learned from the best and She has learned from her mistakes. She will share your joy and your sorrow. She will not forget or abandon you. She will have your back. She will give you her word. She will respect herself and if you show her respect, She will respect you. She is a teacher, doctor, chef, lawyer, financier, photographer. She is in pharmaceuticals, insurance, is an artist, environmentalist, author, journalist, nurse, activist, entrepreneur, traveler, explorer and a great many things too numerous to list. She knows when to be outspoken. She knows when to be reserved. She still works full-time. She works part-time. She has gone back to work. She has embarked upon her second career and She is retired. She still has school age kids while just up the street, She is an empty-nester. She lives where we all call home. She lives abroad and so does She. She feels like She has lived out of a suitcase as She moved all over her adopted country. Meanwhile, She has lived all over the world. She speaks 2 languages. She speaks 3. She went away for a while and came back to where we all call home. She goes back and forth all the time. One She left too soon but is remembered fondly and her spirit lives on.  A few She’s have battled illness and survived. She married young. She married older. She chose not to marry. She married once, then married better. She ain’t marrying nobody again. She’s begun a new relationship. She is a single mother and her children are just fine. She has forgiven. She has been forgiven. She has a lover. She has a wife. She has a husband. She has an ex-husband. Some She’s have late boyfriends and husbands far too soon. She is a mother, a nurturer, healer, counselor, nutritionist, chauffeur and peacemaker – all par for the course when you are trying to put good people on the planet . She is an aunt. She is a sister, a daughter, a mentor, a friend. She is a grandmother. She is a great aunt. She is not a parent but she is parenting her own parents now. She laid her parents to rest. She, just her dad. She, only her mom. She, her brother. She, her sister. She, her child. She has a “sweet hand” and could cook so well everybody get real vex when their belly full and they can’t help themselves to more. She prays. She loves her church. She loves God. She is spiritual. She is less so. She likes to play mas. She ain’t playing mas no more but loves her Carnival still. She is a winner. She is a champion. She has an official title. She has overcome adversity. So has She. And She has as well. She is aware of her mortality. She is an advocate for her child and there are at least 3 other She’s just like her. She has been afraid but She is no coward. She’s been embarrassed. She has experienced redemption. She loves having her genuine friends around her. She is a genuine friend and is (along with a couple other She’s) the reason we have all come together. She can be counted on to make sure She is always available to get together and lime when She comes home for a visit. She will stand up over and over again for what she believes in and what is right. She has faced injustice, pain and heartbreak but She is still here. She has been worried more times than She would have liked but She survived it. She too is still here as is She, after riding that wave of euphoria only to have it crash on top of her and wash her up on the beach. She is no stranger to picking up the pieces, dusting her self off, fixing her hair and starting over. She is proud of herself and She is proud of her family. She is proud to call Her friend. She likes to feel love from everybody and seeks only the truth. She can’t hear music with out moving her hips. She really laughs – like all out genuine from the bottom of her gut laughter. She gets angry. She cries. She re-groups and moves forward. And after being the backbone, the engine, the one who stands up for her family and friends and what She believes in,  She has made a difference and She will continue to make a difference. She has arrived at 50 in style and more than ever She is a force of nature. Today we have She’s touching walls in the pool first in her field. We have She’s back in school further expanding their minds. She’s We have She’s continuing to belt out songs that touch people’s souls. We have She’s athletic as ever and transforming their bodies and are fitter now than they were in their youth.  She senses the body betrayal now and again as her eyesight isn’t as sharp as it used to be and She feels a little wear and tear now and the bones crack louder than ever sometimes but…She is still moving and doing her thing, living life to the fullest and learning new things. She is still playing guitar and piano. Some She’s are still on stage performing. She is still drawing and painting. Some She’s are still playing golf and tennis. She is running marathons and She is like a contortionist with all the yoga while She is still slipping on dance shoes, She is still zipling, She is still hiking and She is still doing tours. She is still swimming, still playing hockey, still doing because She knows “Time don’t stop, nah!” Life is short. Life is for living and She knows She has entered a new phase that frankly is better than the ones before. We have She’s growing locks, chopping off locks, left, right and centre, embracing the grey and their natural curls. She is feeling more sexy and beautiful than ever because She has lived a whole lot of life and has been there, done that and is comfortable in her own skin and She loves how easy being her lovely self can be.She knows natural is better and that natural is beautiful.  She still likes “nice ting” but has less time or desire for frou frou. And hear nuh, the hair might be grey but the skin still tight, tight, tight and not one She looking much different than when She strolled the halls of SJC. Seriously though, None of She really need to wear the reunion name tag because time lookin’ like it stop!  She could show the world that age is just a number. Fifty is re-birth. Fifty is strength and confidence with no shit-talk-let’s-get-down-to-brass-tacks-and-call-a-spade-a-spade. She only has time for what is real. She has buried the hatchet with some. She has buried the past and ended relationships with others. She is particular about whom she calls friend. She is savvy. She is open minded. She will love you, not just with her heart but with her head.  She is brazen and the scars She got over the years have made her stronger. Who knew when She was eleven and twelve and She entered our school for the first time that She would have amounted to so much…that the path that She took, the cards that She was dealt, the calling She had and the circumstances She faced when tallied together would yield so much strength and power. We turned 50. We are fabulous. We are free. We are beautiful and We are all the power of She.

~Cheers to being a part of all of our 50th’s. Thanks for being a part of mine. Here’s to our connection to each other and to witnessing many more birthdays~ Love you all – Danie

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.

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 longhard 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

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