fate and other such things

I've been haunted by an image lately.

My little boy, still, pale and lifeless, lying alone on a hospital bed surrounded by strangers. A tube is down his throat, an IV is in arm, some kind of strange clamp is holding his right eye open as a big machine shoots lasers into him.

Who needs nightmares when this is a reality?

* * * *

Last week, Fève saw his eye specialist, a woman I refer to in my head as the Amazing Doctor Paton (she deserves the full word title, not the abbreviation), and the news was good. The Amazing Doctor Paton thinks that she will be able to save some of the vision in my son's right eye.

After reading the limited amount of information about Coats' disease online (my only source of information about Coats' is the internet; my family doctor had not even heard of the disease), I had accepted the fact that Fève was probably going to go blind in his right eye.

I am totally fine with my son only having one workable eye. It is a minor handicap, if it can even be called that. If that is the most difficult thing life throws at him, then he is an incredibly lucky little dude.

However, one thing I have trouble accepting is the fact that occasionally children die from going under general anaesthetic. If given the choice between my son going blind in one eye or my son dieing, what do you think my choice would be?

My question is: are we tempting fate by agreeing to a bunch of surgeries on our little boy? The whole death by general anaesthetic risk aside, perhaps it is Fève's destiny to go blind; maybe he was meant to lose his eye. Who are we to fuck with Nature's design?

Fève is incredibly lucky that he lives in a world where doctors can do amazing things like save people from going blind, right? I can't refuse surgery on him because I am afraid he might die, right?

Fève's second, and probably not last, surgery is scheduled for sometime in January.

I am sorry, Fate, for tempting you, but I have to do everything possible to save my son's eye.

Right?

Two!

Happy Birthday my darling little boy.

I love you and love you and love you.

october in pictures

Facebook is failing me. I cannot seem to upload any pictures onto it.

Good thing I also have a blog.



Thanksgiving dinner at Grandma and Grandpa's consisted mostly of pumpkin pie and whip cream.




Waiting for the Ghost Train in Stanley Park.




Pumpkin meets pumpkins.




Fève indulging his obsession with diggers.




Visiting the pumpkin patch with grandma and grandpa.




Hay ride.




Grandma helps Fève find the perfect pumpkin.



I see it!




A boy and his pumpkin.




Fève likes apples.




Halloween day. On our way to Granville Island.




Waiting for the boat.




Checking out all the lewt from the Kid's Market.




Our jack-o-lanterns. We displayed them anonymously by the front door to our building.




Fève and his cousin trick-or-treating in Yaletown



He wore his costume for about five minutes.

bittersweet sympathy

I have been getting many phone calls, e-mails and texts in the last few weeks since we discovered Fève has Coats' and they all include similar themes and phrases:

• I am thinking of you
• I can't imagine how hard/scary/devastating this must be for you
• I'm sending you love/prayers/good vibes
  
• Let me know if you need anything

Let me first say that I totally appreciate the large outpouring of sympathy we have been receiving before I risk sounding like a totally ungrateful bitch by saying that I am starting to get fed up by the large outpouring of sympathy we have been receiving.

Mostly I feel like we don't really need any sympathy. Why? Perhaps it is because Fève is his usual joyful, enthusiastic self. Perhaps it is because I feel lucky he doesn't have a disease that is painful or life-threatening or debilitating. Perhaps it is because I recently got worse, scarier news (that I am not quite ready to write about yet). Whatever the reason, we are doing totally fine.

If you are reading this and you recently contacted us sending your sympathies, please know that:

• I appreciate you thinking of us
• This experience has not been particularly hard/scary/devastating
• I can feel your love/prayers/good vibes and they warm me
  
• I need nothing more than I've always needed from you
• I thank you.

I was at a play group in the West End recently when I ran across a dad who has a boy only a little older than Fève. I have known this family for over a year now, so I felt comfortable explaining the whole story to him. After listening, he didn't say that he was sorry to hear about it, he said something amazing, something I had not heard from anyone yet, but something that echoed the feelings in my own heart. He said that he has known many people with all kinds of disabilities who have gone on to do great things and that this experience, this disease, will open up all kinds of opportunities for Fève that he might not have had otherwise. It was a beautiful sentiment to hear.

And it was exactly what I was thinking.

Having Coats' is going to change the trajectory of Fève's life in ways that we will never know, but in ways that are not necessarily bad, negative or scary. In fact, a whole new world of wondrous possibilities has opened up for him.

Here is Fève three days after his surgery:






This boy's spirit cannot be broken by something as small as Coats'. He will be fine.

Better than fine.

Coats' disease

My son has Coats' disease.

We found this out last night. I was relieved to hear this diagnosis, because on Wednesday we were told that he might have cancer, specifically retinoblastoma. After a routine eye exam, it was discovered that something was wrong with Fève's right eye. There was a growth on his retina, but the three different doctors that he saw over the last couple of weeks were not able to get a good look at what it was. Try shining a light into a toddler's eye without him squirming.

Last night we spent nine hours at Children's Hospital waiting to get Fève into the OR. He needed to go under general anesthetic so the doctor could get a good look at his eye. It was one of the most difficult days of my life. As I watched my son flop down onto the table of the CT scanner from the drugs injected into the IV in his wrist, I had a horrible thought that I might never see him alive again.

But I did.

Two hours after going under, he was up again, calling for his mommy.

He doesn't have cancer, but he has some funny, random eye disease that I have never heard of, one with no known cause, and one that I am going to become very, very familiar with.

At this moment I am so grateful that he is alive that I can't even be bothered to care that he might eventually go blind in his right eye.

My son is alive, sleeping happily and soundly in bed right now, and for that I am so very, very thankful.

your face, my **#

Fève is growing up. He wants to do things by himself. Last week I was giving him a bath when he grabbed the washcloth out of my hand and started scrubbing himself.

Can you wash your face? I questioned, wanting to add a little learning-of-body-parts lesson with his washing.

Fève scrubbed his face vigorously.

Can you wash your belly?

Fève scrubbed his belly vigorously.

Can you wash your legs?

Fève scrubbed his legs vigorously.

And so on and so forth.

The next night daddy was home during bathtime. Excited, I summoned him into the bathroom to show him his son's newest accomplishment.

Can you wash your face?

Smiling, with his daddy watching expectantly, Fève scrubbed his bum vigorously.

dear Today Show

I just received a request to sign a petition from one of the many online natural parenting groups that I belong to.

I guess there was a segment on the Today Show about the alleged "dangers" of home birth. If you watch this garbage, I urge you to turn off your TV and read a book. Or two. Or talk to other people. Or experience something for yourself. But don't believe everything you see on TV.

Below is the mass letter being sent to NBC for being crappy at their job.

_________
Dear NBC Producers,

We, the undersigned, collectively voice our deepest concerns over what we believe has been a gross misrepresentation both of midwife-attended homebirth and of the women who choose this option.
While empathizing deeply with the McKenzie family and their loss, we are shocked at the way in which NBC's "Today Show" chose to portray homebirth as dangerous while choosing to ignore ample medical research that demonstrates its safety in the US and in other developed countries around the world. Not only did the producers of the Today Show ignore journalistic due diligence, they also chose to ignore basic rules of fairness by repeatedly citing doctors and the trade union that represents them while denying midwives and their proponents a voice. This is simply irresponsible journalism, and misleading to your viewers. We expect more from such a well-respected program.
We stand in support of families who choose to birth their babies at home with a skilled midwife, not for hedonistic reasons, as the Today Show segment so insultingly suggests, but because they truly believe that it is the best option for themselves and their babies. We support women who choose home birth, who are not following a fad, but who are following their hearts and their informed minds to seek a birth that is both safe and healthy. Far from being a recent trend or fashion, midwifery draws on a continuum of knowledge and experience that goes back many centuries. Midwives are well-trained professionals who specialize in normal birth and provide outcomes that are often superior to obstetrician-attended birth. To suggest otherwise is deeply offensive.
The Today Show missed an opportunity to discuss why, despite its near universal reliance on hospital-based, physician-attended obstetric care in birth, America has one of the worst infant mortality rates in the developed world. It missed an opportunity to discuss the reasons why highly educated, thoughtful and responsible women are choosing a home birth with a qualified midwife as an alternative to a hospital birth- an option that other countries have proven again and again costs less money, necessitates fewer c-sections, and provides better outcomes for mothers and babies than our system. The Today Show missed an opportunity to ask why the United States spent $86 billion in 2006 on maternity care that left the US with one of the worst infant mortality rates in the developed world and left women and their families asking for more choices in their maternity care.
Although every infant death is a terrible tragedy, the real scandal about birth in the US lies not in the death of the McKenzie's baby alone, but in the fact that 13.6 African American babies die for every thousand live births; an infant mortality rate that is triple that of Denmark or South Korea. What is truly shocking is not that a fraction of women choose home birth, but that our international infant mortality ranking has worsened from 12th in the world in 1960 to 29th in 2004 during the same period that our rates of medical intervention in birth have gone up exponentially- Cesarean section rates alone have more than tripled.
We are passionate about childbirth issues because we know that, like the rest of the healthcare system in this country, there is much room for improvement. Drawing battle lines between midwives and doctors and terrorizing the public unnecessarily are hardly constructive means to this end. We call on the Today Show to provide the public with the whole story regarding the evidence and viewpoints supporting the choice of midwife-assisted home birth.

We call on the Today Show to choose responsible journalism.