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For The NICU

So you guys know that September is the NICU (Neonatal Intensive Care Unit) awareness month right?  Yeah, I didn't know either.  Every month there is some disease or disorder that we should worry, promote, and be aware after awhile all that awareness stuff gets tiring... But this is the first time I've heard of an awareness month for a place, rather than a physical condition. What's up with that? How come we need an awareness month for a section of the hospital? We have an awareness month for breast cancer, not the cancer ward why the NICU? I'm pretty sure there is a preemie dedicated month, and one for every other condition that may have put the infant in the NICU in the first place, so why the preferential treatment? After thinking about it for awhile, the only reason I could come up with for the need of this awareness of a place, is that the place itself has inherent issues that people (especially potential NICU parents) should be aware of. No…
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A Birthday Morning

Sometimes I think I have seven years worth of words to say about you,
seven years worth of patience to practice with you,
seven years worth of fear to face with you,
seven years worth of growing to measure,
seven years worth of rules to break.
I sometimes feel that seven years worth of changes,
is seven years too much,
but also too little.
Seven years worth of you,
is more than I expected, and so much less than I desire.
Seven years worth of becoming better.
 Seven years worth of you.

Happy Seven years, my dear little lion man.


Lost In Summer

It has been a long time...maybe the longest since I have written to you all last. This blog has meant many different things to me over the past seven years, in fact, it has taken as many different manifestations as its subject matter, Leo the little lion! Not so little anymore, in a couple weeks he will be seven years old.  And so will this blog!  It is amazing to think back to the frightening beginning of it all, and to realize that never in a hundred years could I have pictured myself now, sitting and typing this post at my sunny kitchen table, in my own house, while the early morning sounds trickle in from the open porch door and mingle with the voices of my children in the other room. Not one child, as we all thought seven years ago, but two.  Seven years ago, Leo was not going to live to his first birthday. He was not going to be able to talk sweetly to his big sister, as I hear him doing right now. Though I'm sitting in the other room, I can picture them both clearly; his s…

A Fishy Spring

Well, here it is, the spring we've all been gasping for and the forecast is predicting three weeks of rain.  The vitamin D deprivation has eased into the bottom of the chart and put its feet up for a long stay.  This morning Leo categorically refused to swallow the spoonful of vit D infused and incredibly fancy and also incredibly expensive fish oil that I have pinned all our future happiness upon. As I sat there next to him, watching the stuff gently dribble out of his mouth and pool in his lap, where no doubt the incredibly fancy and expensive oil will make an equally incredible and lasting stain, and which because of I will have to change his whole outfit, making us yet again late for school, I wondered about the fallacies of life. This oil was supposed to make it all better by golly! And yet here I am, wrestling with a protesting cub, who in his throes of displeasure as I try to squeegee his shirt off him, manages to smear more of the vile stuff all over the table and chair, …

Making Breathing Room For The Soul

Those of you who practice yoga may know what it means to "open the heart." Even though at first it sounds like something one does purely with the brain or the emotions, it is actually something you do with your whole body. It is when, usually in a physically challenging pose, one stretches out with the front body, reaching with the heart outwards, pulling away from the back, and sending the ribcage forward into space. Yoga is an incredibly easy vehicle for metaphors, mostly because what we do with our body impacts every aspect of our life. No really, stop and think about it. Our body is what makes us, us, right? It is our body; made up of billions of teeny parts which were dictated by some random gene pattern which then in turn created the person who we see each day in the bathroom mirror. We are given some semblance of control over this body that was given to us by the function of our brain. The brain tells the body how and where to move through space and time. How we oper…

A Gentle Light

This winter so far has not been gentle for the Lion Cub,  and here it is almost February, which means he has been slogging through turbulent conditions now for three months without any signs of clearing or peace.  It's probably redundant of me at this point to say it's been hard. 

To recap what's been going on, or more precisely, what's not been going on... What's not been going on is even a week without killer migraine (we are calling them that for lack of a better word) episodes.  What's not been happening is any insight medically from his docs as to what these episodes are and why they are happening so frequently, or what we can do to treat or stop them. And all the other stuff that has been happening, is also in the negative realm. I see a developing trend here... The boy hasn't gone a full week at school since before Christmas break. I love being at home with him, but sometimes I need to go to work! Not to mention the strain of trying to prepare for a…

A Resolution Of Sorts

I found this interesting article a couple months ago, it was actually a series of several presentations about epilepsy and how to live with it, either as the sufferer or the parent of one. Each chapter deals with a specific aspect of epilepsy; the diagnosis, treatment, and the day to day physical and often emotional battles of this disorder.
Here is a paragraph from the text that I just couldn't get out of my head: "So why is epilepsy so devastating? For most parents it is not the physical challenges of epilepsy that are the problem – it is the emotional challenges. Seizures last minutes or less, but worry about the next seizure can last a lifetime. For most parents and older children, it is the daily, unrelenting worry about the next seizure and its imagined consequences that makes epilepsy so difficult. Epilepsy is not so much a physical disorder as it is a disorder of anticipation." Adisorderof anticipation. Hmmmm. If one were to just take the above sentence to decons…