post

A Life Hanging In The Balance

April 20, 2011 By

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.

Filed Under: Bereavement, Injury, life, positive thoughts Tagged With: , , , , , , , ,
post

A Letter For Amy

April 3, 2011 By

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

Filed Under: Baby loss, Bereavement, Blood donation Tagged With: , , , , , , , ,
post

He Lives To Fight Another Day…

January 10, 2011 By

For those following the story, Captain Snuggles chugs along.  Last night was a bad one.  There was much bleeding, so much that a blood transfusion was called for.  Amy’s full update can be found here.

I want to take a moment here to spare a thought for a special group of people: donors.  Baby David is still with us – albeit in a tenuous state – because of a liver and Lord knows how many pints of blood that originated from other human beings.  Blood and organ donors save lives.  They give hope where otherwise there would be none.

I have my usual request tonight, which is to please keep thinking those positive thoughts.  Keep saying those prayers to whatever supreme being you happen to believe in.  Continue to send out that vibrant, life-giving energy to Amy and her son David.

And Amy, may you feel the love of a thousand hugs, and know that there are many people rooting for David and reaching out a hand to hold you steady when you need it.  Know that you are not alone.

Kirsten

 

Filed Under: Illness, positive thoughts Tagged With: , , , , , , ,
post

A Captain’s Courage

January 9, 2011 By

I find that I am posting twice on some days now.  I wish I didn’t have the material that allows me to do so.  I wish that I didn’t have a friend keeping vigil at her critically ill baby boy’s hospital bed.  But I do, and Amy – a woman with immense strength and bravery – is in need of any many prayers and positive thoughts that she can possibly get for her son, David, affectionately referred to as Captain Snuggles.

This kid is amazing.  He is not even a year old and he has been through a liver transplant, intubation, countless medications, complications, skin blistering and sloughing away – and he is hanging in there.  He is not doing well.  His kidneys are acting up, to the point where this tiny little human being could end up on dialysis.  His lungs are acting up, so the doctors having to up his ventilator settings and are now looking at upgrading the ventilator itself.

But he is hanging in there.

This is one brave, brave little boy.

Let’s all help him to be brave.  Let’s help his Mom to be brave.

Please.

Those positive thoughts that people have been sending out for Amy and the Little Cap’n?  They are being noticed.  The nurses in the hospital have commented on the atmosphere in David’s room.

So let’s keep it going, people.  Let’s keep that energy flowing, bright and beautiful, to Amy and David.

Thank you so much for caring.
Kirsten

For a full update, please check out Amy’s blog.

 

Filed Under: Illness, positive thoughts Tagged With: , , , , , ,
post

I Thought It Would Be Hard

January 8, 2011 By

Captain Snuggles

I thought it would be hard to do this one-post-a-day thing, but I find myself with an abundance of material.  Sure, it can be hard to find the time to write, what with a full-time job, a long daily commute, and the whole parenting enchilada.  But I find that the key element is having the seed of an idea in my head.  If I have that to start from, the words flow easily.  To be fair, these are early days, and I’m only one week into this challenge.  A month or six months from now I may be singing a different tune entirely.  But for now, I’m finding this OK.

I thought it would be hard to run a half-marathon.  I was overweight, unfit, and didn’t feel capable of walking down a flight of stairs.  But I planned and trained, I lost weight and got fit.  I still thought it would be hard, because you know, thirteen miles is thirteen miles.  I reasoned, though, that this was two and a half hours of running, of merely putting one foot in front of the other.  Compared with what my son George has to endure, trapped in his world of autism, day in and day out, two and a half hours of running didn’t seem to be too bad.

I thought it would be hard to be a special needs Mom.  I remember sitting in the doctor’s office, receiving the diagnosis, listening to the doctor tell us everything that George would never achieve (some of which he has, in spectacular fashion, since accomplished).  I thought that parenting my beautiful boy would be a lifetime of challenges and heartbreaks.  And yes, there is some of that.  There are days when it all seems too much, when I want to ask the gods of fate why they picked me to fulfill this extremely challenging role in the life of another human being, one who needs special care and attention.

But when I compare that to what some other parents have to go through, it doesn’t seem too bad.  About fifteen years ago, I attended the funeral of a seven-year-old girl who had died from a diabetic complication.  My fiance’s cousin lost his seventeen-year-old son to cancer a little more than a year ago.  Witnessing parents burying their children is awful.  It’s the saddest thing in the universe.

My friend Amy – someone I met through the magic of the Internet just a couple of months ago – is watching over her son David, a.k.a. Capt. Snuggles.  The Captain has a genetic disorder that three of his brothers were also born with.  Nathaniel had just five days on earth before this disease – Citrullinemia – took him from his parents.  Jonathan and Zachary received transplants to “cure” them.  David received a transplant as well, but he is so deep in the woods right now that medical experts are struggling to bring him out.

The last few months have been a series of setbacks and progressions.  Some days good, some days bad.  Right now, things are not looking great, and Amy is now having to endure conversations about “Do Not Resuscitate” orders.

Miracles can happen.  I am writing this in the belief that Capt. Snuggles is going to pull through this and go home to live with his family.

I thought it would be hard to raise a child with autism.  But what I have to go through is nothing compared to what some other parents have to endure.  At least my child is alive.  At least I can kiss him goodnight with the reasonable expectation that I will get to hug him when he wakes up the following morning.

When I think about Amy and her family, and what they’re currently living with, I find myself grateful – tearfully, overwhelmingly grateful – for every single second I have with my boys.

(Click here to read Amy’s story)

Photo credit: Amy (http://transplantedx3.wordpress.com)

Filed Under: Illness, postaday2011 Tagged With: , , , , , , , , ,
post

Raising A Little Chi…

January 7, 2011 By

I am writing this tonight on behalf of someone I have never met in person, yet who I have come to care about a great deal.  Amy is a fellow writer on World Moms Blog, which I am honoured to be a part of.  Amy and I have been getting to know one another through our respective blogs.  She is one of the bravest people I know.  For the last few months, she has been pretty much living at the hospital, at the bedside of her infant son, David, who is very sick with a genetic disorder.

And now Amy and David need your help.  David is in serious trouble – so serious that doctors are talking to Amy about DNR’s for her son (do not resuscitate).  There is a very real possibility that Amy, who has already lost one child to this illness, will have to say goodbye to her precious little boy.

Amy’s story can be found here: http://transplantedx3.wordpress.com/2011/01/07/a-call-to-arms/

I am choosing to believe that a miracle is still possible.

I am posting this, sending it out to whoever I can, in the belief that the greater the number of people who send out positive energy into the universe for Amy and David (a.k.a. Capt. Snuggles), the more chance we’ll have of a positive outcome.

So please, wing a prayer for Amy and David.  Think positive thoughts, send out some good chi into the universe.

Kirsten

Filed Under: Illness, positive thoughts Tagged With: , , , , , , , , ,