Tag Archives: DNR

A Life Hanging In The Balance

20 Apr

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.

I Thought It Would Be Hard

8 Jan

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)

Raising A Little Chi…

7 Jan

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