Archive for the ‘life stuff’ Category

Boxes of old papers and photographs, stacks of books, piles of medical records and therapy reports I need to scan and organize.  The loft in our small town home has become the black hole of all the little bits of our life for which we have no clear cut place.  The loose ends, the question marks —“Do we need to save this?  What if we need this?” 


While my husband has been in school and working every weekend our time together has been limited.  Much of that time is taken up with things like, oh, parenting Nik and dealing with his ongoing health issues; there is never any time or energy left over for tackling any but the smallest of projects around the house.


Niksdad’s recent job loss turned out to be a bit of a mixed blessing this week.  He was home and wasn’t buried in the books so we had a chance to finally tackle the loft.  It’s not finished by a long shot but the work has begun; the “heavy lifting” of moving filing cabinets, repairing a sagging book case —the things I cannot do myself while also keeping a watchful eye on Nik —are complete.  The difference is remarkable; the loft feels larger already in spite of the boxes still stacked in the middle of the room.


I can finally imagine what it will look like when we have completed the project.  More to the point, I can already feel the sense of ease which permeates the space.  Where we once felt squeezed into our little corners of the room —where our desks sit tucked into opposite corners —already it seems more tranquil, more comfortable.  We both wonder why it took us so long to make this space —where we spend so much waking time— our own.  I say it was the vagaries of time and our limited energy supply but I think, in my heart, it goes deeper.




Nik’s recent bout of gastrointestinal illness has been very disturbing; not only has it gone on longer than any other virus he’s ever had, its intensity is unnerving when the waves wash over him.  He is unable to communicate the nature of the pain with more than screams and howls as he doubles over or as he shrieks and kicks his legs to seek some relief.  He clasps his long fingered hands together over and over asking us to help him, to ease his pain.  To make it stop.  We feel helpless to do more than hold him and croon soothing words as we rub his belly or his head, to clean up the aftermath of his body’s release.


This latest development, the hardening of his belly as his too slender body braces itself for the impending pain and uncontrollable outcome, frightens me.  It seems to last for hours and I am gripped with a fear that we are missing something that could mean the difference between life and death.  The recent loss of beautiful Evan sits heavily on my heart as I struggle with my desire to call his mother, Vicki, for advice and my unwillingness to ask her to relive that horrible pain.  I cannot; it would be too cruel.


My husband, the nurse, is quick to assure me that Nik’s bowel sounds are good and his belly does soften some after he’s had a bout of diarrhea —though not nearly back to “normal” enough to ease my fears.  I return to another memory packed away in my own mental loft —a place where there is not and never will be a neat, tidy, compartmentalized storage system for all the hurts and memories of watching my son struggle through so much of his early life.


The discovery of Nik’s intestinal malrotation was unexpected; he’d been showing many of the same symptoms that he has over the past two weeks and he had normal bowel sounds then, too.  Then, he was considered a “very lucky little boy”; the doctors discovered a partial volvulus —an obstruction —which they said was “a time bomb waiting to go off.”


I want to assume there is no such time bomb awaiting us now but the memories of all those times we thought we might lose Nik have built themselves up into a thick, smooth scar upon which I worry —much the same way others might rub a stone or rosary beads —each time Nik’s health takes an unexpected turn.  The history is too strong and the memories run too deep. 



I want to shed the burden but I seem unable to.  There are times it is the thing which keeps me pressing forward for answers on Nik’s behalf.  I fear the complacency.




I sit at my desk, still wedged into the corner but less crowded now.  The room is the same yet it feels different.  Attitude?  Belief?  Perception?  I am uncertain what makes the difference as I begin to make my way through the boxes of old hospital bills and NICU discharge reports.  “What if I need this?  What if Nik needs me to have this?”


I examine the pages, searching for clues —answers someone may have overlooked.  On those same pages, I see hope; for each date racked up on that enormously large hospital bill, it was another day my son lived.  Another day of getting stronger, healthier —closer to coming home.


I realize the answers I seek are not to be found on those pages.  Still, I am unable to let go.

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Sucked Under

I’m here. Honest, I am. I’m nearly recovered from my sister’s beautiful wedding; it was a very special time full of surprises like the arrival of cousins we haven’t seen in more than ten years, and making new connections with family we thought was completely cut off from us. (It’s a long story involving divorces and family conflicts which go back to a prior generation.)

Anyway, things are moving along at quite a rapid clip in our daily life. Nik is doing phenomenally well and I promise to write about it soon. Niksdad is also doing well; he just got another “A” in his classes. I’m quite proud of him; I truly think he may be up for valedictorian of his class at graduation in May 2009!

Me? I’m still recovering from the wedding. More accurately, from all the food and drink that have totally thrown my body into a state of distress. To make a long story short, I’m not diabetic but I have some insulin resistance stemming from polycystic ovaries (PCOS). Every once in a while I con myself into thinking that I don’t need to be careful about what I eat and drink. HA!

I’m trying to rid myself of the evil sugar/refined carbs monster which has taken over my brain and body and left me in a stupor.
I suppose it doesn’t help that Nik is teething now, getting molars, and has been waking at night in pain. Once the Advil kicks in and the pain is gone, he is wide awake and wants to play until all hours. Last night was 10:45 p.m. to 3:00 a.m. His sleep cycle is out of whack, mine is too and it just seems so hard to cobble together enough coherent thought just to make it through the day let alone try to write a blog post.
I’m getting back to my normal self bit by bit and resuming my workouts with my sister. That should all help…I hope!

Meanwhile, I leave you with this belated Wordless Wednesday image. I call it “Fantasies DO come true!” (Note for my visually impaired readers; it’s a silhouette image of Niksdad holding Nik in his arms and standing with the vacuum cleaner! LOL —Yes, he actually used it, too!)

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I know I’ve been out of sight on my own blog for a while. Things are relatively okay —just moving too damn fast to catch my breath lately. Some good, some not so good, and lots of in-between.

The words seem to be all jammed up inside of me lately and I can’t quite get them out to tell you about so much that’s happening.

Weaning Nik from his seizure meds. I’m trying to put together a post that captures some important information I hope will be useful to other parents. Not in a “Gee, look at our awful experience, please feel sorry for my child” way; more along the lines of “Holy crap, we never knew these things could ever happen and no one ever warns you. I don’t want to get all alarmist on you but you might want to pay attention to this…” sort of way. Yeah, it’s a very difficult balance to strike and I’m struggling with it.

I will say this though — the side effects from weaning the meds are every bit as bad as they were on the upswing. Sleeping through the night —once the hallmark of Nik’s good health and stellar disposition —has basically become a thing of the distant past. He seems to sleep through the night once roughly every two weeks; just enough to tease me with a small burst of energy and the feeling that “Okay, this isn’t so bad; I can make it through now.” Then “WHAM!” along comes a spate of really bad nights.

Toss into the mix that Niksdad started school this past week, my hormones are totally out of whack, and my mother decided this was the week she simply had to come help me with a bunch of small home improvements projects for a few hours each day when Nik didn’t have any appointments. Oh yeah, toss in my knee is just about recovered from an injury weeks ago and I haven’t been to the gym much and you can kind of imagine how manic I’ve been feeling.

So, it’s been just too much effort for me to crank it up to try to share things of moment with you. Sorry. It’s not that I don’t want to; it’s just that I don’t want to expend the energy. Subtle difference, I know. Truly, it’s me, not you. Sigh. The brief spurts of energy I do have I use to visit other’s blogs, Tweet, or do some research online.

But I’m slowly getting back to the gym (which helps with the hormones and energy levels a bit), Nik’s making good progress in so many areas —in spite of the meds issue and now a painful ear infection, and Niksdad really likes his new job, too. The weather is cooling off and my house is getting put back in order —both literally and metaphorically speaking— and I expect I may feel human again sometime soon.

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Dreams Deferred

What happens to a dream deferred?
Does it dry up
like a raisin in the sun?
Or fester like a sore—
And then run?
Does it stink like rotten meat?
Or crust and sugar over—
like a syrupy sweet?

Maybe it just sags
like a heavy load.

Or does it explode?

A Dream Deferred ~ Langston Hughes

Driving across the top span of the George Washington Bridge, I snapped photos with my cell phone like a giddy tourist. I couldn’t help myself; I was awash in nostalgia. I was filled with memories of the good times I had as a single gal living in NYC oh-so-many years ago. Memories of friends and relationships, adventures and mishaps, dreams chased and dreams set aside —all were embodied and brought back to life as I glimpsed familiar sites along the way.

I thought I was homesick for those long ago days —that a piece of me was missing —but, the truth is, I really am not; I’m not the same woman I was back then.

My life has taken me in such a different direction than I ever could have imagined. I didn’t accomplish many of the things I thought I would when I set out for California; I didn’t start my arts camp for kids with special needs and I didn’t make my fortune in the internet start-ups or high tech companies I thought would be my ticket to a better life. Yet, here I am —back in my hometown and significantly less well off financially than I was years ago —with tremendous appreciation for not only where my life is but for the path which has led me here.


When I arrived home, I knew the house would not be a mess; that’s simply not the way Niksdad rolls. Truth be told, he’s a better housekeeper than I —though he never makes me wrong for it; we both recognize that we have different strengths and we use them accordingly when possible. I should go away more often; the floors were vacuumed, the carpets steamed, the bathroom cleaned to a shine, and the laundry was done. I breathed a deep sigh of relief and contentment; I wept tears of appreciation mingled with my sadness and frustration over my visit with my friend.

The story is not mine to tell and I’m not sure I can even wrap my brain around it enough to convey more than the barest essence anyway. Suffice to say, my trip was an eye opening journey which was at once painful and liberating. Painful to see how people may or may not handle the adversities thrown in their life path —the roads taken and choices made which lead each of us to our current place on the map. Painful to watch dreams die and spirits wither from inflexibility. Liberating in the knowledge that there absolutely is choice in each situation and that strength lies in embracing the choices and making them work for us. Liberating in the knowledge that one of the biggest choices we can make is our attitude; the choice to either be vanquished or victor, diminished or augmented, to be resentful or resourceful —hopeless or hopeful —is one we can choose anew each and every day.

Hope” is the thing with feathers
That perches in the soul
And sings the tune without the words
And never stops at all

~Emily Dickinson

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