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Remembering A Captain

A year ago today, a baby named David got his angel wings. After tirelessly staying by his side during his five-month-stay in hospital, his Mom – so brave, so beautiful inside and out, and with a heart bursting with love – held him in her arms as he winged his way into the next world.

During his time on earth, David – known to many of us as Captain Snuggles – changed many lives. He inspired people to appreciate what they had and to live their lives better. Through him, people started donating blood. Because David was here with us, because he fought so bravely, lives have been saved, continue to be saved because of the people who continue to donate blood in his honour.

What an amazing legacy for an eight-month-old baby.

To Captain Snuggles: rest in peace, smile on the people who live because of you, and touch your family with love.

To David’s mom Amy, who fought so hard for her son’s life: I send you vibes of love, strength, and peace. I wish I could be close enough to hug you, but through the bonds of friendship, I am with you tonight. May you and your family find strength in being together, and may all of you feel the loving presence of the brave Cap’n.

 

 

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Remembering the Captain

Captain Snuggles would have been one year old today. His mom, Amy, should be wiping birthday cake off a sticky face and cursing about how difficult it can be to get new toys out of packaging these days. Instead, she is going to the cemetery to visit a tiny grave.

Amy, if you’re reading this, my thoughts are with you today. I am sending you love and hugs, and wishing for a day of peace for you.

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Remembering the Captain

Captain Snuggles would have been one year old today. His mom, Amy, should be wiping birthday cake off a sticky face and cursing about how difficult it can be to get new toys out of packaging these days. Instead, she is going to the cemetery to visit a tiny grave.

Amy, if you’re reading this, my thoughts are with you today. I am sending you love and hugs, and wishing for a day of peace for you.

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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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A Night Away From Home

They should sell T-shirts that say, “I survived my child’s first overnight stay in a hospital.”  Or they should give out badges, like they do in Girl Scouts. Because let me tell you, it is quite an accomplishment. Just one night in the hospital with my son left me feeling jagged and raw. While I was sitting there yesterday afternoon wondering when I would be able to grab a sandwich and a cup of coffee, I sent a message to my friend Amy, expressing my pure admiration for the fact that she did this in a far more serious situation, day in and day out, for five months.

It all started when James started tossing his cookies at the daycare on Monday. For a full 24 hours he was throwing up and having attacks of diarrhea, and even when they kind-of-sort-of passed, he didn’t get better. By the time I got home from work on Wednesday evening, he was still not eating or drinking, and he was crying out from the pains in his tummy.

Recognizing that most kids’ tummy bugs are over and done with in a day or so, and we were now at the end of Day Three, I took James to the walk-in clinic (no family doctor – ours had the gall to retire, citing stuff like “time with family”). The doctor at the clinic examined James for five minutes and decided he wanted none of it. He told me to get James to the hospital. “Now,” he said.

The triage nurse at the hospital was cranky. She was abrupt and acted as if we were inconveniencing her. I didn’t hold it against her. She was nearing the end of what had probably been a long shift in the emergency room, but still. Being cranky with a sick five-year-old seems a bit much. She did her thing and then sent us off to see the admitting doctor – go to the room at the end of the hall and wait in partition D, she said.

The doctor was cranky. He overheard James saying that we were looking for “Number D” and grumpily said, “D is not a number.”

For God’s sake. I mean, I know E.R. doctors are taxed to the limit. These guys are on their feet for long shifts during which they no doubt have to make many life-or-death decisions, but come on. Don’t take out your stress on a five-year-old child who is visibly ill.

Anyway.

The doctor examined James and said that he was severely dehydrated. He invited me to feel James’ hands. I did, and they were ice-cold. The dehydration had made his core body temperature drop right down. We were taken to a dedicated examination room and IV fluids were started. Within 20 minutes, James’ temperature was looking better.

The on-duty pediatrician came in, examined James, and made the decision to keep him in overnight. He was transferred to the pediatric floor, and we were installed in a room. I helped the nurses get James as settled as he could be, and then I lay in the bed provided for me and failed to sleep. Every now and then I kind of sank into a trance, only to be roused by the comings and goings of the nurses who came in to fuss over James every now and then.

James was in much better spirits when he woke up in the morning. He still couldn’t eat, but he requested and received a Popsicle. In a turn of events that was very sweet, when the nurse came in with the Popsicle, he asked her if she would please get another one for his Mommy. We sat there in companionable silence, eating our Popsicles together (and it was so welcome – my throat was parched), and then another nurse came in bearing gifts.  Apparently, every child admitted to the pediatric floor gets a bag of toys that they get to take home with them.

I borrowed a BlackBerry charger from the doctor, and was able to be in touch with the outside world again. I read and responded to emails, James played with his new toys plus the ones his Dad had brought him from home during the night.  Apart from the occasional stomach cramps and attacks of diarrhea still plaguing James, all was well, if a little bit boring. IV fluids continued to drip into his system, and the comings and goings now involved a different group of doctors and nurses.

In the middle of the afternoon, I was finally able to get a cup of coffee and a sandwich. By this point I was beyond exhaustion and beyond hunger. With the nurse watching James, I fled to the donut shop, where I got a sandwich and a cup of coffee. Then, in a bid to extend my freedom for a little longer, I went into the gift shop and got James a new Cars toy and a book.

Back upstairs, I drank my coffee and ate half of the sandwich. I promptly threw both of them up.

Lovely. Just as my son is getting better, now I start to get sick?

Since I have not had a repeat episode since then, I am assuming that my system was just responding to exhaustion, and that the shock of actually receiving food for the first time in 24 hours was a bit too much for my body.

In the late afternoon, the pediatrician came in and declared James almost well enough to go home. He was hydrated again, he was drinking on his own, and he had even managed a bit of food. All we were waiting for, she said, was for him to pee. Once he had peed, we would know that fluids were getting both into and out of his system OK. In the I.T. world, we would refer to this as end-to-end testing.

A couple of hours later, James’ bladder obliged, and we were given the all-clear to leave. The IV was disconnected, final temperature and blood pressure checks were done, and we were out of there. James was definitely a much more healthy, brighter child than he had been before going in.

It felt almost obscenely good to be back home.

James is OK. George, who was doing a great deal of his own throwing up in our absence, seems to be on the mend. I have not tossed my cookies again (although, to be fair, I haven’t taken a chance on eating either).

Equilibrium seems to be returning…

And I am truly grateful to the doctors and nurses at Centenary Hospital for taking such good care of my baby.

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Chances Of Hope

It is incredible – and sometimes so desperately sad – how everything can change in the blink of an eye.  Just a week ago, I was tweeting and posting messages on my Facebook wall asking people to think healing thoughts for the survival of a little baby known affectionately as Capt. Snuggles.

Today I am asking everyone to send out thoughts of strength and love to his grieving mother, Amy, three days after the tiny body of Capt. Snuggles was laid to rest.

It’s one of those situations where words are not enough.  What do you say to a Mom who has just buried her child?  “I’m sorry your baby died”?  That seems so trite, so inadequate, not nearly enough to express the depth of the sorrow I feel, which is nothing compared to what Amy must be feeling.

It’s not to say that I haven’t tried.  I have left Amy messages letting her know that I am here for her, that I am grieving with her, that I want to do what I can to shoulder some of the heaviness that is filling her world right now.  When she is ready, if and when she needs to, she will reach out to me.  She knows (I hope!) that I am here.  For now, that is what matters.

There is a message that I want to put out there, though, to everyone who reads this.  Capt. Snuggles, during his five month stay in the hospital, underwent a massive array of medical treatments.  That he had hope at all was due to the fact that a family allowed the liver of their loved one to be given to the Captain.  Without that liver, there wouldn’t have been hope.

If you are healthy, if there is no medical reason for you not to, please sign your donor cards.  Please talk to your families, let them know that if they ever have to say goodbye to you, that you would like for your organs to be used to save someone’s life, or at the very least, to give someone hope, to give a family hope.

Capt. Snuggles also received blood.  Many, many units of blood.  Again, that blood would not have been there if there were not people out there willing to give away blood of their own.  These events have inspired me to become a blood donor myself.  I donated for the first time on Thursday, January 20th, and I will donating again in March.  Every 56 days, I will roll up my sleeve, and whisper a prayer for the unknown person who will receive the blood flowing out of me.

I am hoping that by writing this, at least one person who reads it will consider becoming a blood donor.  I know that there are people who are not able to donate for medical reasons.  There are people who really do need to keep their blood for themselves.  But for the majority of us, giving away blood is a piece of cake.  I had absolutely no ill effects after my encounter with Canadian Blood Services.  I felt great, and I didn’t even have a bruise.

If you are medically able to, please look into what it will take to donate blood in your area.  Please think about saving a life, bringing hope and joy to a family.

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How Organization Creates Chaos

This morning I took my Christmas decorations down.  Yes, I know that it is January 28th, and that the 12th day after Christmas passed some time ago.  I have a history of being very last-minute where this kind of thing is concerned, and this laziness is, in fact, the reason we have an artificial Christmas tree.

When you have a real Christmas tree dropping dead pine needles and crap all over your carpet until February, things can get very messy.

The thing is, it’s always a bit of a hassle, not only to take the decorations down, but to put them up in the first place.  You have to dig out boxes that are buried under eleven months’ worth of crap in the storage room, then you have to clear a space for the Christmas tree and figure out how to make your home look festive without being tacky.  Let’s face it, I ain’t Martha Stewart.  I always envy those people who can casually throw a rug over a sofa and make it look like a designer item.  I can spend an hour arranging the rug on the sofa and it will still look like the results of the room throwing up.

Taking the decorations down is worse.  I mean, when do you get the time?  You’re so busy trying to recover – and get your kids to recover – from the remnants of the Christmas season.  You’re trying to catch up on work that’s fallen behind because no-one was at work.  You’re trying to figure out how the kids’ new toys work so you can show them, and you’re trying to figure out where the hell to put all of this new stuff.  With all of this going on, it’s no wonder my Christmas decorations stay up for so long.

This year, I have had an extra excuse, and its name is Autism.  You see, George’s autism hasn’t really affected the comings and goings of the Christmas decorations before, because George has always been pretty cool about things changing.  I always used to think that for a kid with autism, he was pretty adaptable.

That has all changed.

About six months ago, a fear of routine changes reared its ugly head. Now, understand that I’m not just talking about a dislike for or a resistance to change.  I’m talking about actual anxiety fear near-panic that sometimes gets intense enough to make George throw up. We had such an incident recently involving a mirror, and in that case, Gerard and I felt that the best thing would be to restore the mirror to its rightful place to ease George’s anxiety.

So today I took the day off work, with the intention of making a few changes while George wasn’t around.  They were necessary changes that included taking down the Christmas decorations and getting my scary mess of a desk organized (cluttered physical space translates to cluttered mental space and all that).  The kids went off to school, I took a brief moment to relax, and then I started working.  I got the Christmas decorations down and put away, and then I had a major decluttering session.  All of the boxes that were under my desk are now stored more appropriately, meaning there’s room to put my feet.  My filing cabinet has been rearranged, so my files are actually in the cabinet instead of in a broken plastic container on the corner of my desk, which now boasts two stacking trays instead – one for incoming mail, and one for the kids’ homework and school forms and stuff.

When George came home from school, World War III broke out.

First it was the Christmas tree.  Kiddo was insistent on the restoration of the Christmas decorations, and went so far as to start dragging boxes of decorations out of the storage room.  I firmly took said boxes from him and put them back.  He kept mentioning the Christmas tree, but I don’t think it took him long to realize that he wasn’t getting his way with this one.

My desk proved to be the bigger issue.  The broken plastic box that I had discarded?  George wanted it back.  George wanted it back so badly that he was almost panicking.  The poor boy was looking directly into my eyes – something that he only does when he’s feeling emotionally distressed and is desperate to impart a message to me.  Those eyes, those eyes… They had such pain and fear in them.  They were brimming with tears as George begged me to put the box back onto my desk.

I had to say no.  I’m always one to pick my battles with George.  If it doesn’t matter, I don’t make an issue of it.  I let George get his way from time to time.  But sometimes the battle does matter, and this is one of them.  I need for my home office to be organized.  I always have so much to do, so much admin to keep on top of.  The way I was going, I was paying bills late for no reason other than the fact that the papers were getting buried.  I had to arrange things so that I could keep up with everything.  This is definitely a battle I needed to win.

I felt so conflicted, though.  My friend Amy went through the heartbreak of burying her child yesterday, and here I was, with my child alive and well, and I was allowing him to be sad and fearful and distressed.  What kind of mother was I being?

Even with this conflict going on, though, I knew that I was right.  I knew that this was a storm I would just have to weather.  I needed to rearrange things on my desk, and George needed to see that things could change and he would still be safe.

The storm appears to be over – at least for now.  George was upset for a long time, but gradually calmed down.  He started walking around without looking suspiciously at my desk out of the corner of his eye, and he started jumping on the trampoline, making the kinds of sounds he makes when he’s happy and settled.  When he said, “Charlie is a girl” (with reference to Charlie the Unicorn), I knew that he was OK.

Sighs of relief all round.

At least for now.

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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