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A Life Hanging In The Balance

About three weeks ago, we hired a new respite worker for George. It has been a long, frustrating process – anyone who has ever had a need for a respite worker will know that the good ones are like gold dust. They are very hard to find, and even harder to keep.

When our new worker, F, walked into our home for an interview, I liked her immediately. Perhaps more tellingly, both of the kids took to her immediately. In a very short time, she has wormed her way into the hearts of the entire family.

Sadly, as she becomes an important part of our family, a crisis is happening in her own. A couple of weeks ago, the car that her sister and sister-in-law were traveling in was hit by a car making an illegal turn. The driver of the other car drove away at speed, but not before a witness snapped a picture of him with a cell phone. Police have since found the vehicle and identified the driver, who is currently hiding out in the United States.

F’s sister is OK. She has a broken leg and some nasty bruising. The sister-in-law, on the other hand, is in very serious condition. She was pregnant at the time of the collision, and the baby did not survive. And now her own body is gradually shutting down. She is not responding to medication, her lungs are filling up with fluids, and doctors are saying that there is nothing they can do.

She has been moved to palliative care. There have been conversations about DNR’s.

My heart goes out to F, who is very close to her sister-in-law. I think of the anguish she is going through, and the pain of the man who is likely going to be widowed very soon. I think of a two-year-old child whose mother is dying. And it just breaks my heart.

Anyone reading this – please send out positive thoughts of strength and healing to a family who really needs it. The doctors say that a miracle is still possible. Let’s try to bend the will of the Universe to make that miracle happen.

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A Letter For Amy

To my dear friend Amy,

It has been more than two months now since you held your beautiful Captain Snuggles in your arms for the last time. I was one of many people who had been sending out prayers, positive thoughts, positive energy, in the hopes of keeping him alive and with you. I like to think that although the brave Captain still left us, we collectively managed to shift the Universe just enough to give you some extra time with him. Maybe, during those long sleepless nights, you felt a warm aura surrounding you as people sent out virtual hugs for you. The outcome was not what anyone wanted, but maybe – just maybe – we made some kind of difference.

I was so desperate to help you back then, to do something that could be of some practical use to you. But with us living on opposite sides of the border, this was not possible. So I donated blood. It was a momentous occasion. I felt humbled by the fact that it had taken a baby’s tragic situation to spur me on to action, and at the same time, I felt good that it had spurred me on to action. David was still with us on that day when I made my first donation, and I had entertained fantasies of meeting him someday and saying thank you to him for making me a better person.

My heart shattered when I learned of his passing. I could not begin to imagine what this was like for you, what it would be like for you going forward. I confess that I did not know what words to say to you to comfort you, so I opted for honesty. I told you that I didn’t know what to say, but that I was thinking of you, and that I was there for you whenever and however you needed.

Please know that this has not changed. More than two months have passed since Captain Snuggles left us, but for you there must be times when it feels like the blink of an eye. Grief is such a personal process. Everyone goes through it in their own way, at their own pace. No-one can truly understand another person’s grief. I still cannot imagine what you are going through and how it feels, but I am still there for you. You will be in my heart and mind as you go through this first year of birthdays and anniversaries.

This is a big week for us. This is the week of the Captain Snuggles Blood Drive. This week, many people are going to donate blood (some already have) in memory of your beautiful boy. Every unit of blood has the potential to help up to three people. It has the potential to give up to three families that precious commodity of hope. Through the inspiration of Captain Snuggles, this week is all about giving life.

I know that the blood drive is not going to bring the Captain back, and it’s probably not going to make your grieving process any easier. But he will live on in the hearts and minds of all who donate, and all who want to donate but are medically unable to. There could well be people whose lives will be saved by this blood drive – people who, although they will never know it, will be alive because of this baby who has touched so many hearts.

I send you lots of love and hugs, and vibes of strength and peace.

Your friend Kirsten

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Starting A Snowball Effect

From time to time, I find myself asking the following question: Why am I here?

Sometimes, when I am in a particularly bleak frame of mind, this train of thought leads me straight into a downward spiral, and I then have a hell of job trying to climb back out.

Other times, though, I can ask this question and come up with an answer (or answers) that make me feel – well, good about who I am. Because, you know, I think I’m quite a nice person. Not that I’m the type to blow my own trumpet or anything.

I am here to make a difference, to help make the world a better place. If my presence on this earth changes just one life for the better, then I think that maybe I’ll have done OK. I like to think that my immediate circle – my family and my close friends – are enriched by the fact that I am in their lives.

I try to instill positive values in my kids, to set them up for happy and productive lives in which they, in turn, can have a positive influence on those around them.

I am a strong supporter and advocate for the autism community. I run a race every year to raise funds for autism services, and I try to spread awareness and acceptance for people like my beautiful boy George. I also try to ease James’ path as sibling to a child with autism, to allow him to balance care and concern for his brother with his own need for independence and identity as a human being in his own right.

As Gerard’s partner, I try to make a difference in the lives of the youth in our community. I support Gerard in his endeavours to keep teens away from a life of crime and gangsterism, to steer them into avenues where they can have a more positive outlet for their creative energy.

When someone I love needs advice or support, I try to be there for them as much as I  can. I have a genuine love and concern for my family and friends, and it gives me joy to help them through troubled times.

When a friend’s baby dies, there is very little I can do to ease the pain, apart from making sure my friend knows I am there, and offering whatever support I can. There is no way to get anything positive out of that kind of tragedy.

Or… is there?

On January 20th, I donated blood for the first time, in honour of Capt. Snuggles, an eight-month-old baby who was fighting for his life. Four days later, I wept – even sitting at my workstation where other people could see me, I openly wept – as I read the devastating news that Capt. Snuggles had slipped from this world into the next.

A couple of weeks later, I started pondering the question: if I started the chain of events, how many people could I get to donate blood, in memory of Capt. Snuggles, over a five-day period? After running my idea by Amy, the brave, brave Mom of Capt. Snuggles, and after receiving her blessing (and some really valuable advice), I am now officially launching the campaign.

The Captain Snuggles Blood Drive.

From 9:00 a.m. Eastern Time on April 4th until 8:00 p.m. Eastern Time on April 8th, I am inviting everyone who is medically eligible to roll up their sleeves and give a unit of blood in memory of Capt. Snuggles. No matter where you are geographically located, please consider going to your local blood donor clinic in the first week of April to start in motion a sequence of actions that could save someone’s life.

I am relying on word of mouth here, so I need everyone’s help. Please spread the word. Repost, reblog, tweet, talk – please do whatever you can to let the people in your life know about this drive. Let’s work together to create a snowball effect that would make actual snowballs look like lazy amateurs.

Together, let’s save lives.

Currently, there are three ways for you to sign up:

  1. Respond to the Facebook event that has been set up.
  2. Send an email to captsnugglesblooddrive@gmail.com
  3. Leave a comment on this post, but make sure there is some way for me to contact you.

If you sign up, you will receive regular news updates and information, and I will even help you find a blood donor clinic convenient to you. Once your donation has been made, I will ask you to let me know, and you will be added to what will hopefully be the giant number of people who made a giant difference in honour of an incredibly brave, tough baby.

This blood drive is not going to diminish the tragedy of Capt. Snuggles’ plight, or the grieving of his family.

What it will do, though, is this. It will allow Capt. Snuggles to live on through the good that we will do for other families who need life, who need hope.

Together, let’s see what difference we can make.

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Planting A Little Love

Captain Snuggles

It has been almost four weeks. Four weeks since a family was shattered, and a Mom’s hopes for her son died with him.

Almost four weeks ago, my friend Amy sat in a rocking chair in a hospital room, and held her eight-month-old son David (Capt. Snuggles) as his life slipped away from him after a long and brave battle.

As Amy and her family grieve for Capt. Snuggles, as they try to come to terms with this massive shift in their world, they have to think of practicalities. Eating, sleeping, bathing. Work, school, household chores. The kinds of things that most of us do without even thinking become huge efforts for families dealing with this kind of tragedy. Because Amy does not inhabit the same world that most people do, where babies get to grow up and take first steps and utter first words, it can be so difficult to understand what she must be going through.

In addition to the regular practicalities of daily living, Amy and her family have to think about money, more so than many of us. They have many, many expenses to pay off. Capt. Snuggles had a liver transplant and five months worth of extensive, highly specialized medical care. That doesn’t come cheap. He had to be given a funeral. That doesn’t come cheap, either. And so, my friend – my brave, courageous, amazing friend – finds herself struggling to pay off expenses relating to the beloved son that she grieves for.

If you would like to help, there is a way. For today only, you can win one of many lovely prizes in exchange for donating money to Amy and her husband Jamie, to go towards the medical and funeral costs. All you have to do is plant a little love.

Please consider helping. I could not think of a more deserving family.

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Ashes And Roses

It is with a bittersweet feeling that I pay tribute to both of my parents on the anniversary of their marriage. The sweet part of the equation stems from the fact that my parents had a fantastic marriage. They had a deep, profound love for one another and apart from the occasional spat, they treated each other with the utmost respect. I could not have asked for better role models to show me just what a loving, solid marriage should look like.

The bitterness, of course, is because Dad is no longer with us. Today, Mom is in Cape Town without her beloved husband by her side, gazing longingly into the sea in which she placed his ashes six years ago today, on what would have been their 40th wedding anniversary.

As I reflect on this day, I cannot help but contemplate my own relationship with Gerard, now almost a decade old, and our own upcoming wedding. For all intents and purposes, we are already married. We have been living together for a long time, we have created new human beings, and our union is legally recognized as a spousal relationship. But still, getting married will, I believe, add a new kind of depth to our relationship. We see it as the chance of a new beginning, a new and wonderful chapter in our lives.

People ask why we waited for long to get married; why, indeed, we are bothering to get married at all. The answer, quite simply, is that we have arrived at a point in our life together where we feel that we can get married. You see, Gerard and I have been through a lot. We have survived a great deal: the loss of both of our fathers, my post-partum depression following the birth of James, George’s autism diagnosis, near-bankruptcy, to name but a few. Our relationship has been placed under unbelievable strain; it has reached the breaking point.

But when it reached the breaking point, it didn’t break. Somehow we saw our way through all of the dark times. We found a way to stick together, to emerge from that terrible bleakness and desolation as a pair, as an integrated whole. We know what we are capable of surviving. Neither of us could imagine life without the other one. We feel that we have earned the privilege of being married to each other.

I cannot wait. I am really, really excited when I think about the day I will exchange wedding vows with my beloved, in front of friends and family. It will be an amazing feeling, walking down the aisle on the arm of my brother, and then looking into Gerard’s eyes as I declare my eternal love for him. Mom will likely shed some tears, but there will be happy tears mixed in with the sad.

It makes me sad, knowing that I will not get a father-daughter dance with Dad. But I know he will be there, hopefully nodding with approval and glowing with pride.

February 6th, 2005

Dad has been gone for exactly two months. It is almost sunset.

Mom tentatively carries the urn holding his ashes to the edge of the rocks, with her sister standing a respectful distance behind. Clutching Dad to her heart one last time, she whispers her goodbyes to the wind, and hands the urn to the man standing beside her, the man who is surefooted enough to brave the rocks.

Mom stands beside her sister, and watches as the ashes of her beloved are gently transferred from the urn to the sea, from whence they will travel to who knows where? Many, many rose petals are placed into the sea to travel with the ashes.

Mom watches in silence as the ashes and the rose petals float out into the ocean. The tide is low, the rose petals waft lazily as they escort Dad into the beginning of his eternal travels. Together, the roses and the ashes reach the horizon. With the sun directly behind them, the ocean current moves them around in a small circle, as if they are waving goodbye to the widow standing on the rocks.

Ashes and roses disappear from sight, just as the sun dips below the horizon and closes the chapter on the day.

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I Don’t Want To Say The Words

Oh God, how badly I don’t want to say the words.  What I would give to not have to write this, to have to tell you that after five months of sitting by the hospital bedside of Captain Snuggles, my dear friend Amy now has to leave there without her son.

Today, the Captain – a brave, tough little boy who touched and inspired so many lives – lost his battle to survive.

The heartbreak and devastation I am feeling at this moment is but a drop in the bucket compared to what Amy is going through.  This is a situation where “Sorry” cannot begin to be enough.

Thank you for all of your prayers, your positive thoughts, the healing vibes you have sent out into the Universe.  Even though Captain Snuggles is no longer with us, your thoughts and prayers did make a difference.  They made a difference to Amy, who drew comfort from knowing that we were out there, rooting for her son.

And who knows: maybe, through our collective efforts, we succeeded in shifting the Universe just enough to give Amy a bit of extra time with baby David.

Amy continues to need lots of prayers, love and positive thoughts.  Maybe, when she has the time to sit down and take a quiet moment, she will feel our love and support, and be uplifted by it, even for a moment.

R.I.P. Captain Snuggles
11 May 2010 ~ 24 January 2011

 

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Remembering Dad

On another Friday the Thirteenth 73 years ago, my Dad was born.  He shares his birthday with Fidel Castro (who he couldn’t stand) and Alfred Hitchcock (who he greatly admired). Dad’s birthday is always a bittersweet occasion for me. Bitter because I feel sadness that he is no longer with us. Sweet because even though he’s gone, his birthday is a reminder that his life should be celebrated.

I have tremendous admiration for both of my parents. Now that I’m a parent myself, I have an appreciation for what a tough job it is. In a way, my parents had more parenting challenges than I have, simply because they had no idea where their children were coming  from. My brother and I are both adopted, and adoptions were done very differently back then. There was no disclosure, no sharing of information, no opportunity for the birth mother to even meet, let alone choose, the adoptive parents. It was by pure chance, a cosmic roll of the dice, that I ended up with the parents I got.

Fate did well by me. If I had been able to choose my parents, I think I would have chosen the ones I got. I did not appreciate them enough when I was a kid (because what child ever does?) and I would not attempt to claim that my parents were perfect. I can say, however, that if I am a tenth as good a parent as either my Mom or my Dad, then my kids are very lucky. I am fortunate to still have Mom. She may live on the other side of the world to me, but she is still mentor, adviser, critic when she needs to be, friend, confidante, and above all, Mom.

As I think about my Dad, I see snippets of my life played back like a slideshow. Me and Dad at a father-and-daughter square dancing event when I was seven. Going for a ride in his vintage sports car. Watching the Olympics with him when we were both bunged up with colds. Our shared love of reading that generated trips to the library followed by a cup of juice, and as I got older, coffee. The tax returns he did for me each year because I couldn’t figure out how to do them myself.

I made stupid mistakes in my youth. That’s what young people do. Their brains are not wired for wise decisions, which is why they need parents. Dad, being older and infinitely wiser than me, would see the mistakes coming and warn me. Being young and impulsive, I would do something stupid anyway and find myself in the middle of a crisis. Dad would always be there to help me pick up the pieces of my life, and he was kind enough to never say that he’d told me so.

I will never forget the moment when Dad saw his newborn grandson for the first time. He and Mom were exhausted, fresh off the plane from South Africa. They had come from the airport straight to the hospital to see George, who was then just one day old. As I placed the baby into Mom’s arms and then Dad’s, it was like slotting the final piece into a jigsaw puzzle to complete the picture. Grandparenthood fulfilled something in both of them, though it is hard to define exactly what. My sadness at the fact that my boys are growing up without their Granddad is countered by the knowledge that my Dad, for all too brief a time, experienced the joy of being a grandparent.

Dad died almost six years ago, taken from us all too soon by cancer. I choose to believe that he is still around, that from some vantage point, he is watching his grandchildren grow up. I choose to believe that when I participate in races, Dad – who was one of the top marathoners of his day – is running right along with me. I hope he is proud of me, and happy with the job he did as a parent.

Rest in peace, Dad. I love and miss you.
~ Cyril James Jessiman ~
~ 13 August 1937 – 6 December 2004 ~

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Stop the world, I need to breathe!

To say that the last week has been a bit eventful would be like saying Hitler was a bit aggressive.  It’s either feast or famine in my life.  Things will chug along, same-old-same-old, for weeks at a time, with nothing changing and nothing really newsworthy happening.  Then all of a sudden, I will have several weeks’ worth of events will flock to me like mosquitoes flock to my husband (seriously, bugs love him and for the most part, avoid me.  Why is that?)

Last Sunday I ran a race, the Sporting Life 10K in downtown Toronto.  It was a phenomenal event featuring more than 14,000 runners and superb race organization.  The logistics of planning something that involves that many people must be akin to a nightmare, but these guys pulled it off flawlessly.  The run itself was a lot of fun.  The route was easy, downhill most of the way, and the weather was perfect.  The predicted thundershowers failed to materialize, but the cloud cover and the gentle breeze were in evidence.  I completed the run in 1:05:00 – fast enough for a personal best time for the distance, but still leaving plenty of room for more personal best times in the future.

A quick word about something Gerard did for me before the race.  When he and James dropped me off at the start line, I gave James a kiss, and then went round to the back of the van to pick up my bag.  Only to see that Gerard had propped up a framed picture of my Dad next to my bag.  Dad, who died five years ago, was also a runner – one of the best in South Africa at his prime – and this was Gerard’s way of telling me that Dad was with me.  I was so touched, it brought tears to my eyes.

Several hours after the race, I started feeling a little off.  I figured that I had pushed myself on the run, not eaten soon enough afterwards, and consumed way too much coffee.  Feeling a little sick made complete sense to me.  But then – there’s no polite way to describe this, really – I started tossing my cookies.  Big time, for several hours.  Many hours, in fact.  Until 4:00 the following morning.  Even when there were no cookies left, the cookies continued to be tossed.  It was clear that I had a bug.  I had felt fine for the run – perhaps the bug was lurking there in the corner, just waiting for its moment to arrive.  Although the throwing-up incidents came to an end after about sixteen hours, I felt weak and drained for several days.

On Sunday afternoon, about an hour after I started feeling sick, I heard from Robert, the brother of my friend Tim.  Tim, who had recently been diagnosed with stomach cancer, had passed away.  Tim and I were friends for years.  We wrote columns for the same e-zine, and Tim was my unofficial tech support guy.  When George was diagnosed with autism, Tim was the guy who recognized my need for an outlet; a place to write and vent about autism and what my family was going through.  He gave me a forum to do so, and he was supremely supportive of everything – my parenting, my running, my writing.  He was also one of the funniest people I’ve ever known.

Fast forward to Thursday afternoon.  I was sitting at work, an hour away from going to the Keg with a few of my coworkers to bid farewell to someone who was leaving to go and live in Abu Dhabi.  I had resolved to drink nothing but water at the Keg – I was still feeling mild effects from the weekend stomach bug.  Work was going smoothly enough, when I got a phonecall from George’s therapy centre.  The news was good and bad.  The good news is that they wanted to put George into something called the school stream.  Instead of receiving one-on-one therapy, he would be in a simulated classroom environment with four other children.  The concept sounded good but the timing sounded bad.  When I expressed the opinion that George would not be ready for this by the proposed start date of September, I was told that if he continued with his one-on-one therapy, he would most likely be discharged in December.  Meaning that by January, he would be thrown full-time into a school system that he is nowhere near ready for.  The one day a week of school that he does get is challenging enough.  What this whole conversation left me with is the feeling that I am having to make a critical decision that could make or break George.  It’s like playing Russian Roulette with my child’s future.  What I decided, there and then, was that we had to fight as hard as we needed to to get the best for George.  Thanks to the advice of someone I know who has been through these fights for her own son and knows the system backwards, I was able to tone down some of the anger and gloves-off fighting attitude that I would have gone in with.

I didn’t only drink water at the Keg that afternoon.

On Friday morning, Gerard and I had a meeting at the therapy centre.  We got to see the classroom that is used for the school stream kids, and we were allowed to observe proceedings.  We asked a ton of questions, and got a clearer picture of the program.  In school stream, a teacher works with a group of five children in a mock classroom setting.  Each of the five kids still has a one-on-one support staff member with them, to prompt them as needed.  It’s kind of like a cross between what George is getting now and school.  The whole idea is get kids used to the idea of following school routines, walking in line, participating in class discussion.  In essence, school stream prepares kids for full-time school.  It’s a half-day program; for the other half-day, the kids are in fact in school.  That aspect of the program is simply to get the kids used to being at a real school every day, even if it’s just for a couple of hours.

Here’s what sold us on this program: social communication.  That is George’s single biggest challenge – one that, by its very nature, one-on-one therapy cannot really address.  The school stream program could be hugely beneficial to George from that aspect alone.  The whole thing is based on group interaction and the need to communicate and participate.  The program typically lasts for a year, but if the child needs it for longer, it can be extended.  It includes regular speech therapy, occupational therapy, and social communication workshops.

We said yes.  On seeing the program in action and getting all the facts, it does seem like the right thing to do.  It is the next logical step in this roadmap that is George’s life, and I am excited about the potential it has for him.  He will be continuing with his current program until September, and then switching to school stream in September.

After this was all sorted out, Gerard and I went on to James’ school where there was another occasion for us to attend.  James is a new inductee to the school system, having just started Junior Kindergarten last September.  With a Christmas birthday, he is the youngest and smallest kid in his class.  He needed special nurturing in the beginning, and his teacher, Mr. T., took him under his wing.  James adored his teacher, who was popular with the entire student body: he doubled as the school librarian and frequently gave the kids a break on their late fees.

In December Mr. T., who had recently celebrated his thirtieth birthday, contracted pneumonia and died.  It was a huge shock for everyone; I found myself with the task of explaining the meaning of this to a kid who was still a couple of weeks away from his fourth birthday.  I had to try and make him understand that Mr. T. loved him very much, but was never coming back.  Over the last few months, James has dealt with alternating cycles of grief, denial, and acceptance.

On Friday, he got to say goodbye.  The school put together a memorial assembly, a celebration of life in honour of Mr. T.  James and his classmates sang a song called “It’s a Great Day”, a cheerful song that Mr. T. would have approved of.  My heart swelled with pride and my eyes filled with tears.  There were more songs performed by other classes, quotes, a wonderful slideshow.  I had the honour of meeting Mr. T.’s family – his wonderful parents, brother, and partner.  Will this be effective closure for James?  Only time will tell.

So now I am in a state of exhaustion and very heightened emotion.  I feel overwhelmed and a little stressed.  I know that I just need to give myself time to wind down from all of these happenings.  I am sure tomorrow’s 19km training run will help!