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

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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