quest for a faerie child

life after...

I think I am beginning to cope with the nightshade reality.  It has taken me several days, I must admit.  But on the bright side, it did only take a couple days, right?  I'm not curled up in a fetal position, wondering how I am going to exist without being able to pluck a lovely, red, ripe, juicy, still-warm tomato from the vine and eat it.  I am not sitting here wondering what I am going to do with the gobs of roasted tomato sauce I made this summer. 

Well ok.  I am kind of wondering what I am going to do with it and I am still trying to fathom how to deal with dishes I would normally make with peppers or tomatoes or lemon as a key ingredient.  And it is killing me that I have more tomatoes than I know what to do with just hanging from the vines in my front and back yard, literally rotting on them. 

But, I am realizing this is just going to be a challenge for me to overcome.  I'm sure there are tons of people who won't touch tomatoes or peppers and I'm sure they can live gastronomically enjoyable lives.  Right?

Is that even a word... gastronomically?  If it's not, it should be.

I am going to need to revamp my style.  That's all there is to it.  I'll need to alter things a bit.  Change things up.  Branch out.  Research.

On a more positive note, I added tree nuts in again today.  Raw almonds and cashews, to be exact.  And so far I am fine.  There is a god.  I do believe.

Today was a Tuesday and you know what that means, don't you?  If you don't:  see here.  Today was even crazier than last week.  I know it seems impossible, but it was.  On top of last week's insanity, add in an ultrasound for Max through which he kicked and screamed and writhed with such strength and fury it took every ounce of my own strength and body weight to keep him still and I am here to say, I did not manage it.  Oh and Ro screamed the whole way through, as if trying to offer moral support to his big brother.  Add in Max running away from me twice while in the hospital and entering an elevator before I had even turned the corner to see him do so... and you begin to see what today was like.

When I brought the boys home I was shellshocked and shaking.  It took an hour to calm down.  An hour.

I prepared a roast early this morning for all the men in my life to eat while I munched on a salad.  Aren't I just the best?  Yeah.  I would be really really great if I had remembered to tell Moose to put it in the oven, given that it roasts for 4 hours.  I remembered at 430 as I was leaving work.  Yey me.

So, I munched on a salad, while my children and husband ate take-out pizza.  Lovely me.  I take care of them so well, don't I?  Of course Max ate an entire bowl full of cut up pizza.  If only he would do that with meals I lovingly create instead of the crap that comes from my forgetfulness, things would be golden.

Though, he did eat something I made that is just about as good for you as you can get.  As soon as I have a moment tomorrow, I'll post that here.  It was a major coup.  Stay tuned for a cauliflower coup, as well.

sadness

This morning I awakened with a heavy, mournful heart.  I also awakened with a still upset abdominal system and this is all a result of having added nightshades back into my diet yesterday.  Yes.  Me, who never has a fridge without a red or yellow bell pepper in it, who cooks with tomatoes several times a week at least, has just realized she is intolerant to or has a pronounced allergy to one or quite possibly both of those foods.

This should not surprise me.  At one point in my life, tomatoes gave me hives.  But the truth is, I am somewhat devastated by this.  I am devastated because I am making these changes to feel better and to control my MS.  In the past if I wanted tomatoes, I would go ahead and eat them and suffer with the rotating ichiness/hives as it cycled through my body for several hours.  

I must admit, I also wasn't quite the cook I am now.  This was in my late teens/early twenties. I was just beginning to branch out and experiment at that time.  I didn't have 'staples' as I do now.  But, I am older now.  I am more accomplished as a cook and I have developed my own style, a style that relies heavily on tomatoes and peppers.  I also am not at a point where I want to just go ahead and eat it if I want to because I am doing it to control my MS and eating foods that kick up my immune system just because I want to flies in the face of everything I am trying to do.

There's also the fact that eating them yesterday did not send me into a hive-state (though I did get some very mild itching after the raw tomatoes).  They actually made me feel sick and every time I think about them right now, I start feeling that way again.

No.  I won't be eating tomatoes again soon.  I may experiment with the peppers because it is possible this is all just a result of the tomatoes, though I suspect it is not.  

I just spent an entire hour pawing through the Whole Life Nutrition Kitchen cookbook in an attempt to make myself feel better.  I intended this exercise to show me there can be life after nightshades.  All it ended up doing was throwing me into a fit of despair.  Every single recipe that looked lovely and appealing to me that wasn't Thai or curry-inspired (and some that did), used tomatoes or red bell peppers or lemon juice --- all of which I must now eliminate in order to not feel sick.

I suppose I should look at this as a challenge, but the truth is I just feel sad.

Whole Life Nutrition Kitchen Giveaway

I have found this amazing blog this summer.  Ali and Tom from Whole Life Nutrition, have a blog where they post some of the best recipes I've seen all summer and they are gluten, sugar and dairy-free!  Today's post is for a coconut sugar apple-crisp and a giveaway of coconut sugar.  You should check them out if you are considering a whole-grain diet for yourself or your family.  I promise you, you never knew how delicious a life change this could be until you check out their recipes!

Whole Life Nutrition Kitchen

the inspiration...

Today was one of those super crazy days, with events flying past you with such speed and momentum the individual moments blur in your memory.  I was up early, though why I even say this as if it is a momentous occasion or something, I have no idea because these days the alarm rings at 4am every morning, regardless of the day of the week.  I know you're thinking "Why in the world would she be getting up even earlier than she used to pre-transplant??"

The answer is simple.  I am crazy.  Or perhaps it is just the billion and one things on my proverbial plate making me crazy, the billion and one things I never seem to get to, no matter how early I haul myself out of bed.  This is why I say I am crazy.  I attempt the impossible and when it doesn't work, I just keep at it like a hampster on a wheel.

Ah, but I digress.  This post is not about my plate, nor how I can never seem to clean it.

This is the down and dirty of my day:

Both kids up at 630am.  Quick bath for Rowan, and I do mean quick...as in minutes.  Meds packed, bag packed, diapers packed, wipes packed, g-tubing packed and out the door with both boys in tow by 720am to get stuck in a bit of traffic.  Labs for Max at 740, with orders not in - necessitating a short wait.  Feeding clinic at 8am, to which the nutritionist was 15 minutes late.  Quick-like feeding clinic with suggestions thrown at me so fast it would make anyone's head spin and both boys wolfing down whatever Steve gave them. Out the office door at 840.  Run with both boys (Ro in an umbrella stroller, Max trying to keep up with me on foot) down to starbucks to get some much needed caffeine and back up to the 7th floor again.  Uroglogy post-op appointment at 850.  Out the office and hospital door at 950.  Fly home and in the door at 1020.  Try to put Ro down for a nap.  Run around like a chicken with its head cut off as I throw things in a bag for work.  Deposit children with Moose at 1040 and run out the door to catch a bus back up to the hill to work.  Work for 4.5 hours, during which time I run over to transplant specialty pharmacy and pick up a billion and one bottles of meds for Max, forgetting I am on the bus.  Get off work, jump on the unairconditioned bus in 90+ degree heat and proceed to nod off for the entire ride home.  Off the bus at 5:13 and walk the 5-6 blocks home with the entire transplant pharmacy in my hands.  Feed the boys and me and Moose, get their beds and Max's pump ready, put them in bed and here I am.

That is my blurry day in a nutshell.

These days this is what my Tuesdays look like.  Insanity.  Crazy busy insanity leaving me feeling shellsocked on my front porch in the evening and wondering if a day could get any more packed.  Seriously, could it?  I don't know how.

But my day is really not what this post is about, either.  However, I mention it here because it deserves its due when considering what I really want to talk about.

And that is just how far we've come in 2.5 years.  How far we've come in a few short months.  Despite the insanity of my schedule (still), there is something that bears stating and that is regardless of how much I run around on a daily basis (mostly for Max), it is a completely different ball of wax than it was pre-June 8th.  It is different because for the first time since Max was a 20 week old fetus in my womb, there is no overarching worry casting its sometimes faint, sometimes thundering cloud upon us.

Max is doing well, so well I have no worry and I do mean that genuinely.  I do not worry for him at the present time.  I am completely clueless as to the weekly values of his lab results.  And if you know me at all, you know this is unbelievable. I go from appointment to appointment in a blissful state of being.

This weekend Max was admitted for observation after a routine biopsy to check and make sure there is no localized rejection not showing up in his labwork.  It was supposed to be an outpatient procedure, but the day before they decided to admit him afterwards so they could watch him overnight.  And while this might seem like another trial to endure, it was not.

It was, in a word... joyful.  We are veterans.  We are a success story.  The nurses and residents and aids and health unit coordinators know us, know Max and now they all know he was transplanted, finally.  One of our favorite nurses, Debbie, who was a godsend all through the horrible peritonitis admit, fought with the other nurses to have Max as her patient on Friday.  We talked.  We reminisced, because we've had her a number of times...not just during the horror stay.  Urology residents stopped by to see us.  Pediatric residents stopped by to say hi.

Max and I spent the afternoon and evening lying side by side on a big boy bed, watching movies and cuddling with Max signing and saying "I love you" to me over and over until he was finally cleared to get up and walk around.  We ate dinner in bed and got crumbs everywhere (or rather Max did), but I didn't care.  We took a long, long walk around campus in the fading summer evening.  We came back and both went to sleep at 9pm and I got 8 hours of uninterrupted sleep and Max got a full 12 with not a single waking moment.  It was heavenly.

I bet you never thought you'd hear a hospital stay described in that manner by me, did you?

Me neither.

But that is life now.  That is life with Max.  Sure it's hard and sure he's at that age where he's testing, testing, testing.  But gone is the fear of the unknown.  Gone is the fear of what a diagnosis of End-Stage Renal Disease means.

Make no mistake, this blissful state of being is not forever.  There will come a time where lab values will begin to deteriorate, where his lovely new/used kidney will begin to falter, where dialysis will rear its ugly head again.  This is a fact.

But for now, I feel as I've earned the right to walk around in bliss.  I've earned the right to ignore the weekly labs, to attend appointment after appointment with a smile and happy thoughts, to joyfully talk to our amazing doctors and nurses and to enjoy these moments.  Max has earned the right to live as normal a little-boy life as possible.  We've earned the right to revel in our success, in Max's success.

Because you know... it could have gone differently.  At any point in time, it could have gone drastically, irreversibly different.

But it didn't... and thank god. 

So please join me in congratulating Maximus as his new, improved life gets under way, as he continues to learn to eat successfully, as his speech picks up more and more every day, as he grows and develops at lightning awe-inspiring speed.

Congratulations Max!  You are an inspiration and we love you dearly!

This is me

I forgot to mention, this is me:  In the Moment

Oh and this is going to be me, as soon as I stop feeling like crap and can get around to conceptualizing how to tackle the idea:  Nourishing the Emperor.

For why I am feeling so poorly, see the first...  

the cloying grasp of the past.

Since my mother and sister left, I've been in a cooking frenzy:  spicy summer black bean salad, banana walnut bread, almond banana pancakes, veggie pancakes, Ro's ultimate bean cakes, rosemary zucchini soup, italian wedding soup, mini chicken and veggie meatballs, roasted tomato sauce, and chicken stock have been flowing from my kitchen in overwheming amounts.

I am on a kick.  A gluten-free, dairy-free, sugar-free kick.

Perhaps "kick" isn't the right terminology.  I am not on a gluten-free, dairy-free, sugar-free kick.  I am on a recipe modification kick, taking recipes I know and love and turning them into something not only I can eat, but that my family will eat, as well.

This is a creative draw on my energy load, leaving me sapped and strangely with the inability to sit down and write at the end of the day.  I have been largely silent these days because life is good.  Life is crazy and hectic, as always, but my mind is quiet for the first time in what seems like years.

Perhaps quiet isn't quite the right desciptor.  It is more so that I am contemplative in a way that does not beg to be blogged about on most days.

However, this morning I awakened with a concept swirling around in my thoughts.  I awakened early to clean up the kitchen from yesterday's whirlwind cooking marathon and to begin yet another batch of roasted tomato sauce.  Tomatoes are pouring from my garden in such voluminous quantities the only thing left to do with them is to turn them into a sauce.

As I stood at the sink, doing dishes with scalding hot water, I was thinking about myself as an adult.  As an adult, I try to not think unkind thoughts about people.  I try to be generous in spirit to them, even if I do not understand what motivates them.  I do not like to focus negative energy anywhere, especially on people.

As a teenager and young adult, I was not quite so altruistic and kind.  As a teen, I don't think I thought very much about the greater picture.  I was pretty focused on myself and how things made me feel.  If someone was bitchy or unkind to me, I lacked the maturity to be able to reason, to come at a situation with some level of understanding of human nature.  I lacked the ability to put the behavior in perspective.

What I was thinking about this morning is how the past can, at times, be so vivid the mere memory of it has the ability to take all the lessons you've learned and toss them right out the window.  It can take a full-grown adult and in the blink of an eye, turn them back into the child they once were.

This happened to me yesterday when confronted peripherally with a figure from my past, who caused great strife for a short period of time when I was a teen and living in West Germany.  I'm not going to go into specifics, because the details are not truly important.  Suffice it to say, I heard something from a friend, a friend with whom I was extraordinarily close when we were both exchange students.  I heard from my friend that this person had made a shitty comment about me yesterday in relation to that time period in our lives.

I was somewhat shocked by the comment.  It was as if 20+ years had never even occurred and I was back in Germany at 16 years of age.  I was shocked that this person would still hold a grudge against me, this person who was probably close to the age I currently am back then.  One would hope they had already achieved that enlightenment at that time and if not, at the very least, that they would have it now.

Not so, it seems.

Regardless, I was even more shocked that I could be so effectively rendered helpless and feeling much like I did way back then.  I really found myself just wanting to tell her off, to tell her what a bitter miserable person I thought she was then and which it would seem she is now.  I was shocked all my life lessons seemed to be gone and I was reacting exactly as I would have as a 16 year old.

The past is a powerful pull.  It can draw us back into it's cloying grasp at a moment's notice, without warning.  And I must admit when it happens, it is unsettling, uncomfortable and leaves me struggling to find an equilibrium I thought I had long since achieved.

My task for today is to pull myself away from the past and stop incessantly analyzing.  I could analyze the leg off a chair.  I could analyze myself into oblivion if I let it happen.  The past is the past.

Here and now.  Here and now.  Here and now.

Repeat as necessary.