Friday, February 24, 2006


Yay! the snow goddess heard me! we have REAL snow, like almost a foot. When I took the garbage out it was up to the top of my boots. It's been snowing little fluffy white blessed snowflakes for almost three days, I had to shovel my walk this morning - (my odd jobs guy did it for me yesterday lest you think I'm the delinquent of the neighborhood) - and it was quite funny, trying to shovel with an 8month belly getting in the way. It's amazing how much stomach muscles do for you, I really miss them.

Tuesday, February 21, 2006

Sudden Death

...of infants, in case you were thinking I was going to launch into a diatribe about overtime in hockey games. Just in from the community clinic: don't have family beds (ie bring your baby into your bed) or Your Baby Will Die. So a hallowed institution has been summarily nixed by a group of middle-aged white males (namely the American Obstetrics Association) who have undoubtedly never had to feed a baby night after night.

Even my community nurse sis-in-law has joined their ranks, albeit reluctantly, after reviewing the research on the subject. Apparently until the mid 90's there was little information on what causes SIDS - now they're linking it primarily to smoking, drinking/ drugs, and secondarily "other unknown causes". Nevertheless, no babies in bed. No babies on couch. No babies sleeping on their bellies (which by the way, every single one of my ten nieces and nephews were subjected to because it was the "safest" at the time) No babies in soft cribs. No crib bumper pads. Apparently, babies on floor, on their backs, with no pillows and if you're lucky a thin hard sponge for a mattress, is the only thing that guarantees their safety. It's astonishing our species survives to adulthood at all.

...I think I'm basically callused when it comes to humanity. I mean, we all gotta die. Even babies die sometimes. The overall incidence in the States is somewhere around 1.2 deaths per 1000 births. This is less than 1/10 of 1% which to me, is miniscule.

Of course everyone says "well would you want YOUR baby to die of SIDS?" and though I'm horribly tempted to reply with a cutting remark about their intelligence levels, I inevitably agree of course I wouldn't want that. But does that mean I'll necessarily follow every recommendation by the establishment, which is inevitably based on gross statistics and more often than not, speculation? Dammit, I'm sorry but I'm not going to do that. I will do what I think a loving caring parent would do to safeguard their child. I refuse to be driven to fear-based parenting. If generations of humans have survived to maturity despite scientific and parental ignorance, then goddess willing so will my offspring.

Before you rush to chastise me, this doesn't mean I would deliberately place my child in a dangerous situation. What I'm trying to define is the line in the sand in managing risk to my child. I think 1/10 of 1% is an acceptable risk level. I will take sensible precautions, but I will have my child close to me. And if that means in my bed, then that will be in my bed. Mind you, I do have a king-size bed so it would take some doing for me to actually roll over the bolsters and onto my child - and being a light sleeper, a speed-bump like that would definitely wake me up before I had baby-pate on my hands. It's undoubtedly different if you have two adults and a baby in, say, a queen-size bed. (personally I don't know how couples manage on a queen size, but that's a whole other rant) Sometimes I think parents have abrogated their rights and responsibilities in child care to any and every expert who chooses to propound on what is or is not safe practice.

Monday, February 06, 2006

Great souls

I have a little nephew (5) and niece (2) who have been diagnosed with SMA, Spinal Muscular Atrophy. What it means in English is that they never develop any muscle mass or tone, of any kind. Eventually as they grow out of babyhood, their own bodies are too heavy for their muscles to hold up and they become completely helpless. Fortunately or unfortunately, depending on how you look at it, their mental acuity is unimpaired. They are bright, sociable and sunny children.

Parenting special needs children on a daily basis is heartbreaking, but when a health crisis is encountered it becomes even harder to bear. My sister-in law sent this note about my nephew's spinal development that has me in tears, and I had to share it with you.

Those two little bodies shelter such bright souls. My own "problems" fade to nothing when I hear about their trials.

From Karen:

Yesterday was a hard day. I hate all the medical aspects to Ishan and Shanaya's diagnosis of SMA. We had what I thought would be a routine appointment, turned out to be yet another blatant reminder of what SMA is.

Ishan has had what we call a turtle shell to make it a little more inviting. It is is a hard foam vest that he is suppose to wear all day everyday. It is because he has scoliosis, and it is to buy time for delaying back surgery. I have hardly had it on him, because he feels very unstable in it, and it limits him in what he can do. Also, breathing is practically not an option in this thing. I felt justified in choosing what I felt the lesser of two evils, freedom to play and function as normally as possible or, keep his back straight.

Well I got read the riot act yesterday. I was informed that surgery is usually done around 40 degree curvature, and Ishan is at 44. I was also told that if it goes much further it is hard to correct. His rib cage is rotated, and is growing funny. Because he is still quite young he still has some flexibility in his spine, and lots more growth time, causing the doctor to want to wait as long as possible.

The doctor was pretty hard nosed about wearing the vest, and explaining what is going on in Ishan's body, and what could happen. It is not pretty. The doctor left the room for a few minutes, and I saw that Ishan was holding back tears. I asked him what was wrong, and he started to cry and said he was too young. I agree! He just turned 5! It is not fair that some children have to go through so much physical
suffering. I told him that he would be OK, and that I know some kids who have had back surgery and they are doing great. One even younger that Ishan. But we should try to hold it off as long as possible by wearing the turtle shell. He just wanted to be held, and I couldn't hold myself together , seeing him in
emotional pain. We just cuddled and cried together.

Ishan told me that he doesn't like the idea of wearing the turtle shell, but he will do it to help his back. I feel so bad, that I might have been able to delay this surgery by getting him to wear the vest all the time, but am so proud of Ishan in his maturity to do something that he doesn't like for the better.

Don't we all have those dragons that we face? Eating more vegetables, exercising, studying, working, etc. Ishan's maturity humbles me. Ishan is crazy about
pretending he is a knight lately, and I think he is truly a dragon slayer.