quest for a faerie child

here and now

What do you most want for your family's future?
Presented by Intel, Sponsors of Tomorrow.

It's funny how your utmost desires can change in the blink of an eye, how you can be focusing so intently upon a desired outcome for years, that everything else falls to the wayside.  Your life's purpose, your sole intent is to achieve that goal and once you do, you run the risk of feeling lost.  You run the risk of floundering, of feeling aimless because you've focused on this outcome for so long that you failed to even think beyond it.

In instances like these, it is understandable to find yourself in this position.  It is understandble that you couldn't allow yourself to forecast the future.  You could even say it was a matter of life and death, this thing, for which you were wishing.  And you would not be exaggerating.  Thinking beyond it seemed incomprehensible because what if you did not achieve it?  What if the worst happened and it became a future you were never meant to know?  Would you be daring the worst to presume to imagine a future where this became your reality?

If you had asked two months ago what I most wanted for my family's future, my answer would have been unequivocal.  I would have responded without a single thought.  What I most wanted was for my oldest son (of two) to receive a kidney and be transplanted.

I wanted this, not just for him, but for all of us.  I wanted dialysis to be a thing of the past.  I wanted my son to begin to develop like a normal 2.5 year old.  I wanted him to learn to eat, to grow to his fullest potential.  I wanted him to live.  I wanted our lives to stop focusing so intently upon his health and care and to be able to devote as much time to my second son, as I had to my first.  I wanted to enjoy life with my husband, to go on dates with him and to be able to focus as much on our relationship as any couple with two babies is able to do.

From the moment Max was born, it seemed as if our entire lives were focused on the pursuit of this transplant and everything it entailed to get him to the point where he could actually have one.  We placed plans on hold, had to forgo ideas of vacations.  We needed a bigger house and yet any time that subject would rise, we had to shove it back down.  We would tell ourselves, "This is not a good time.  Maybe after Max is transplanted."

On June 8th, 2009 at approximately 6am, I received the long awaited and seemingly elusive call.  After 9 months on the deceased donor list and 2.5 years in total of waiting for this moment, Max was finally transplanted with his new kidney.  12 hours after the call came in, he was out of surgery and in recovery.  12 hours from then, his new kidney was functioning better than anyone could have hoped for.  Almost 2 months later, his speech is taking off.  He is discovering the world of food and enjoying almost every minute of it.  He is beginning to grow.

And the stress in our lives has reduced so dramatically and in ways difficult for anyone else to grasp.

The future we refused to fully forecast began on June 8th.

So what, you might ask, do I wish for now, now that we have what we have always wanted?

It's funny how going through something so dramatic as a life-saving surgery, the outcome of which is fantastic, can effect the way in which you look at the world.  What I have realized in the last two months is that everything I have ever truly wanted, everything important and worthy of pursuit, is already a part of my reality. 

We have a beautiful life.  We are not wealthy.  We don't own our own home.  We struggle with finances like almost everyone else we know.  But, we are happy in ways with which no material possession nor any amount of money in this world could ever compete.  Our sons are amazing, beautiful little children.  Our marriage is what we were waiting for.

This is your life.  Right now. Don't wish it away by wanting what you don't have.  Enjoy everything you have right now, right here.

I know I will be.

it's the silly things...

It is 5:15pm and the city of Portland is baking.  The last I checked the weather channel website, it was sitting at 109, though the local channels state it is 106.  It is so hot that standing in the sun is something that can be done for minutes at best, at least for those of us in the Pacific Northwest where it is hotter than it has ever been in the history of recorded temperatures and heat like this is something we are not accustomed to in the slightest.

I cracked an egg on the sidewalk with Moose this afternoon upon returning home from my day in the office.  The activity outside our house was so interesting, several of the girls who work across the street, ran out of the building and came out to watch my little experiment.  We were out there for five minutes at the most.  When we went back inside, there were bubbles forming around the line of the yolk.  About 10 minutes after that, I carried Max outside to check on our egg and the yolk was firm enough to touch without getting any moisture on your finger.  I took pictures and uploaded them to facebook, which  makes me laugh.

It's the silly things that get you through the unyielding heat.  Oh yes...

I'm not superhuman...

Lately there are moments as I'm giving Max his evening meds, where the responsibility of the road we've traveled and what is laid out before us, seems overwhelming.  I looked down upon him in his crib, amazed that he has a functioning kidney working away inside him and then it hit me:

It continues to function solely based upon three very important medications, without which his own body would take that life-giving/life-sustaining organ and kill it.  His own little baby body would do what it is meant to do and would quickly reject the one thing capable of giving him some semblance of a little boy life. 

The medication must be given twice a day at the same time each night with no more than an hour's variance.  To miss a dose, to give a dose too late, is to risk rejection.   In the almost two months since he was transplanted, Moose and I have had one communication error, or better stated, I assumed he had given them when I didn't see the full syringes lying on the dresser where I had left them after preparing him.

He assumed they were empty without really looking at them, as he cleaned up the dresser top after the boys were asleep and placed them in the kitchen to be washed.

The error became clear around 1am that night and the medication should have been administered at 8pm.  Words cannot express what I felt when I realized the dose had been missed.  I cried, deep racking sobs.  I killed myself a thousand times over.  I imagined immediate rejection.  I imagined impending dialysis.  I imagined the worst.  It was so devastating to me that I couldn't even post about it.

I was racked with guilt for days afterwards.  I should have questioned it when they were no longer on the dresser.  It never even occurred to me that they could look empty in the twilight dusk of the room.  It never even occurred to me that they could be sitting on the kitchen counter, alone and abandoned and that my son was left defenseless for a period of time, while I slept.

Since that time, I've stopped assuming and Moose as stopped picking up after the boys go to sleep. 

Since that time, I've become all too aware that we are the only things standing between Max and kidney damage, organ rejection.  We will have noone to blame but ourselves if something should go wrong as a result of missed doses or late doses or the myriad other little things that need to be kept track of and monitored.  Checking his BP twice a day is no longer a means to ensure the correct dialysis therapy is utilized.  It is a means to ensure that insidious bodily function known as rejection isn't trying to sink its claws into Max and his kidney.  Weighing him is no longer to ensure the dialysis is going properly, it is to ensure his kidney isn't faltering.

It is, at times, overwhelming and frightening.  And someday I would love to reach a point where my own human mistakes don't send me into a days-long horror show of guilt.

Someday I would love to be able to say to myself (and believe it) that I am doing the very best that I can.  I'm not superhuman... right?

Right?

new = not fabulous

Oh and I have to say the 'new' and 'fabulous' typepad is not so fabulous, in my estimation.  It is more like an exercise in frustration when it comes to editing the design of your blog.  I sincerely think they should have hired me to test it before they went live...

There's honestly nothing I dislike more than having to troubleshoot and test what exactly the problem is when I am paying for a service and the software.  I do enough of this at work.  It's not fun for my 'blocked' self...  when my creativity is in the toilet.

It serves to further remind me why I don't work in software testing any longer. 

Do I sound bitchy?  I know I do.

You'll have to forgive me and blame it on the unyielding heat....

blocks, blockages, kidney camp and experiences found distinctly lacking

It is time for me to admit something.  It is something I really would rather not have faced.  However, the time has certainly come for me to address the issue at hand and that is that I am blocked.  In recent weeks, I haven't been updating as much, not because I am so terribly busy that I can't even fathom the idea of sitting down to write, but rather because I haven't got a thing to say. And don't get me wrong, I am busy.. I am as busy as I ever was.  I am busier even at the present time, but when has that truly stopped me before?

I don't mind saying that this bothers me.  It frightens me in indescribable ways.  It isn't as if my life isn't worthy of being placed into words, but rather it is just that I can't seem to decide how to describe it.  The wit has left me.  The pithy, sly comments are gone.

I reach for them, but they are like the droplets of water wafting across our deck from the mister at this very moment.  As soon as you reach out to touch them, they are no more.

Do you know how horrible it is to 'need' to write and when you sit down to do it, nothing comes out?  Generally posts just scream out at me from my thoughts.  I'll be driving down the street and the idea will come to me.  Usually, I require a first sentence and this I compose in my mind as I am going about my day.  Once I have that, I am home-free. 

Lately I can't even get the first word, let alone a sentence.  I'll think to myself, "I should post about this.... I should write about this...," but it rarely goes beyond that.  When it comes to that time in the day where I tend to sit down and think about what I am going to do, I'll realize there was something about which I wanted to write, but it either no longer seems as fabulous as I thought it was to begin with or I can't even recall what it was in the first place.

Perhaps I should force myself to take my own advice, advice I have given to others and stop thinking about what I am writing, stop obsessing on what I am writing and just write.  As I have said, "The more you do it, the better you become."  Yes, perhaps I should.

So, we are baking in the Pacific Northwest.  The last time I checked the weather before dinner it was 104.  Moose and I just came outside to the back deck for a few minutes and it felt soo much better.

Moose: "Ok... it's feeling better.  I bet you it's 80 now."

Me:  "Well, let's see.  Let me check the weather."

Me: "Uhm... guess again."

Moose:  "What is it?"

Me:  "It's a downright chilly 99, as of 745."

Moose:  "99???"

Me: "You got it.."

We've been in the midst of a heat wave since Saturday, when the temperatures started pushing past 90 and climbing consistently higher with each day that passed.  Today's forecast high was supposed to be 100.  When we hit that at 2pm, I began to realize the meteorologists were dead wrong.  Now, they are forecasting 103 for tomorrow and 100 for Wednesday.

When you start to have that kind of heat consistently over a period of time here, the problem comes when it never cools down overnight, as was the case last night and looks to be the case tonight.  This is fine for climates where hot weather is a given.  This is not so fine when many people do not have airconditioning.  We have two window units that struggle to keep up and you can't keep those on 24 hours a day, now can you?

Kidny camp was this weekend and was, in a phrase "a complete bust".  It was too hot for comfort with the boys.  Combine that with the fact that they really didn't have any age appropriate activities for 3 year olds and under and you have a recipe for misery.  We left early, as in late Saturday afternoon and were never so happy to be home as we were that day, 2 struggling airconditioning units and all.

I will say that there was something very interesting about going, even if it won't really be apporpiate for the boys for another year or two and that was the fact that I did meet a couple sets of parents.  The two families we met both had children who were 7 years old, were born with kidney disease and had the same underlying problem causing the original damage to the kidneys, a urethral valve obstruction.  There were other families there, families with children with clear genetic issues which would have been the cause.  But, I didn't have an opportunity to meet them.

Meeting the people we did gave me a true feeling of not being alone.  For the first time, I could sit and talk with people who have been living this life we've all been dealt for 4.5-5 years longer than us.  Both kids were transplanted around 2 or 3.  One was a girl and one was a boy.

We talked about things like dialysis and how we were the ones doing it in the hospital, not the nurses.  One of the parents had the same experience as I did, with being the one to troubleshoot issues with the residents, etc.  And they were at different hospitals, as well....  We talked about the age of our kids when they first walked (all very late).  I asked about eating and how long that took post-transplant (generally about a year to get to the point where no supplements were needed).  We talked about how people say to us, "I don't know how you do it.."  or "you must be so strong..."

One of the mothers is considering nursing like me.  We laughed together about how we'll be in the hospital, caring for our kids and all the while, watching what the nurses are doing and saying things like, "Ok.. can I watch you do that?"  or "Why are you doing that...?"  or "What would that mean....?"  or "Can I do it...?"

However, other than those moments of bonding, which were lovely to be sure, the energy was weird there.  I don't know if it was the place or the fact that many of the people have been going to kidney camp for years and years.  I'm not sure, but the energy was odd in a way that is difficult to define.  As soon as we made the decision to leave and drove out of the campground, a feeling of tenseness or stress lifted immediately.  Moose and I talked about it the whole way home.

I tend to put a lot of stock in the overall energy of locations.  But this wasn't just a weird campsite.  There were other factors, as well.  Maybe it had to do with the fact that when I was trying to get us registered, two of the people working the desk were obviously irritated with another and were sniping back and forth which seems wholly inappropriate to me.  Maybe it had to do with the fact that noone explained the program for the entire camp was printed on the back of the name badge in font so small I could read it without reading glasses and so for a couple hours, we had no idea what was going on.  Maybe it was because they changed the location of some of the activities, which I guess you were supposed to find out at the welcome, but which we missed because I didn't know the program was on the back and then once I did, I couldn't read it properly and ended up directing us across the entire campground to a location for the activity after the welcome, but that wasn't even correct because they changed it in the welcome.

Do you get my drift...?  We felt like ducks out of water, participating in a sorority where noone tells you the rules or what is going on.

Then the one activity I really wanted to participate in was the group talk for parents.  However, how can you expect parents of toddlers to bring the toddlers to a group talk and have them sit quietly so that we could participate?  You can't.  And we didn't even try.  Max was throwing a huge temper tantrums by that point and Rowan wasn't far behind him in intensity.

I so don't mean to complain ad nauseum about this.  But, I think I was just so very much looking forwad to this experience and it did not live up to my expectations by even 10%. 

Deciding to come home was the best thing we did.  The only thing which saddens me about that is that I didn't get to exchange contact information with the one mother who also wants to be a nurse.  She doesn't live that far from us, maybe a 5-10 minute drive.  So now I'm left trying to figure out how to get in touch with her....  if I could do that, I think the whole experience would have been worth it...

And maybe in the future, we will consider kidney camp once again...

we have forever

I put the boys to bed about a half hour ago and set about getting my dinner ready to grill: fresh, wild alaskan halibut and zucchini/portofino squash from the garden.  I had artichokes cooking in the crockpot today, as well.  As I was getting a simple asian-themed marinade ready, Moose came in from the backyard and said, "See.. I cleaned up from the boys this afternoon and got your computer cord ready." 

I glanced out the back kitchen window and noticed the deck was completely cleaned of the mud covering it less than 30 minutes earlier.  I smiled at him and said, "Thanks baby..."

My plan was to finish up with the prep, grab my laptop and go out to the back deck to blog for a little bit before I began grilling.  It was H. O. T., HOT in the city of Portland today.  It is 6pm and currently sitting at 95 degrees.

When I finished, I went to find my computer and didn't see it on the table where I always leave it.  I went to the kitchen and took a look outside, once more.  There was my computer, plugged in and sitting ready on the table outside.  I smiled to myself and whispered, "Sometimes he is just the sweetest... "

I grabbed a glass of wine and headed out to the back deck.  When I opened up my laptop, there was a tarot card lying inside on the keyboard.  The card was "The High Priestess".  I was suddenly and intensely filled with such love for my husband, my husband who sometimes infuriates me.  My husband who I sometimes look at and think he is an alien from a different planet.

My husband, who time and again, proves that despite how extraordinarily different we are, does know me.  He knows what makes me happy.  He knows my routine.  He knows what will settle me and calm me and he leaves me little messages, like the tarot card, to let me know how much he loves and adores me.  Because he is not the type of person who wears his heart on his sleeve. 

He is not particularly emotive, which is in stark contrast to me.

But, he does show me in his own way, over and over again, what a deep, abiding, forever kind of love truly is.

So, I've changed my diet over the last three weeks or so.   After talking about this at length with a friend of mine in email, I've cut out all dairy, sugar, wheat, gluten and basically anything processed.  I've cut down significantly on my caffeine intake and as of two days ago, stopped drinking coffee, in favor of green tea and herbal teas.

In so doing, I dropped 10lbs without even thinking about it.  If you've been reading me for awhile, you may recall that last summer I was attempting to get rid of all my baby weight.  I stagnated at a certain point and over the winter and basically stayed right where I was at the end of the summer.   But my quest began again once the rain started to subside and I could get out and about with boys2 more easily. 

I am now happy to report that I am within 5 lbs of the weight I was the day I went for my first pre-natal visit during our miscarriage pregnancy, pre-Maximus.  If I were to lose about 15lbs more in total, I will be where I was happiest, weight-wise.

I would not say that was what the books say is my "ideal weight", but I don't put much stock in that.  I put a great deal of stock in how I feel and I felt fabulous at that weight.

Anyway, I am so happy with this diet change, which I actually made in an attempt to control my MS without meds.  The weight loss is an added bonus and I really just want to shout it from the rooftops.  Try removing all of those dietary items I mentioned and see if you don't lose weight and feel great.  I'm completely serious, here.

It is amazing.  And the best part is that I love what I am eating.  I eat healthy fats (like avocados, walnuts, almonds, olive oil, grapeseed oil), lean meats (mostly seafood right now because the pacific northwest just has the most spectacular seafood on the planet), legumes, whole grains, fruits and veggies.  I'm in heaven.

Moose is not so...  but I keep hoping I can convince him to switch over to the light-side and leave his man-food behind.  It will probably take years.  But that's ok...

we have forever..

donating life

I am a neglectful so and so these days, aren't I?  My only excuse of late is that our beloved Sarah was on vacation with her family in Alaska for 10 days and consequently boys 2 + me had loads and loads of alone time.  We spent good portions of our days at the park and it seems as if the rest of our time was spent up on the hill at appointments for Maximus, though I think that is a gross exaggeration.

The truth is, I've been cooking dinner a great deal, trying to keep my house in order (only mildly successfully, I might add) and generally just messing around. 

Sunday Moose, boys2 and I took a much needed and way overdue trip to costco, followed by traipsing around the neighborhood all afternoon.  The intent of the traipsing was to visit an "urban farmer's market" I heard about that was set up at 43rd and Hawthorne.  I had high hopes for this market, founded on the premise of selling produce from "urban farmers", meaning those of us who grow food inside the city.  However, it was tiny and I do mean TINY, as in 2 booths total.  I think this is a new idea and hopefully it will expand over time.  Unfortunately, there wasn't anything for sale that I don't already grow myself, so we did a quick 'fly-by' that lasted all of about 30 seconds.

The most important thing that occurred on Sunday was our trip past Joe-Bike on Hawthorne, where I saw a bike I have been coveting for what seems like forever.  It is the coolest thing I have ever seen and I've been wondering where in the hell people get them from for ages now.  The one I want is located here: The Joe-Bike: Cargo-Bike.  It's outrageously expensive, but is marketed towards people who really want to get rid of their car and utilize a bike as their only means of transportation.

It appeals to me because I do all of our grocery shopping on foot with our stroller.  I've really been wanting a bike that would allow me to haul boys2 + groceries and this is it.  I was thinking it was way outside my price range until Moose suggested the idea of selling my beloved Vespa and using the proceeds to purchase the bike.

Ahhh my vespa... I did so adore you.  However, I haven't ridden you since the early days of my pregnancy with Prince Rowan and with boys2, I just don't have the opportunity to do so any more.  You will forgive me, won't you... if I put you up on the auction block in favor of a 'family vehicle'?  I can't see spending money to insure you when I haven't ridden you in two years, and in truth... I let the insurance lapse when Max was getting his transplant.  Shh... don't tell anyone.

The other big excitement brewing in our lives right now is that I got confirmation that we are going to kidney camp July 24th - 26th.  I've been hearing about this damn camp since chronic kidney disease became the focus of our lives with Max's birth.  However, kids are not eligible to go until they are either on dialysis or have been transplanted.  This would have been our first summer to go even if we hadn't been transplanted.

It's an opportunity to get to know and hang out with other kids and families dealing with the same things we are, as well as our doctors and healthcare team.  It was iffy on whether or not Max would be cleared to go because he is so newly transplanted, but they have ok'd it and if you knew how many times we've been asked if we were going by everyone since June 8th, you would be astounded.

We'll be staying in a cabin for the weekend and this will be our only opportunity to do any kind of camping until maybe late August.  The only reason why Max can go now is because all of our healthcare team will be there, as well.  You couldn't ask for a safer environment to be out in the woods.

So .. in a week and a half, we'll be surrounded by tranplant and dialysis kids.  I'm so excited I could pee my pants... honestly.

I've been asked a number of times recently about Max's donor and what we know about them, so I thought I would post a little about what happens when you receive a deceased donor kidney.  The truth is that right now, we know next to nothing about the donor.  The only thing we were able to ascertain from his doctor was that the donor was young (early 20's).  We don't know gender, location or the circumstances of their passing.

Recpients are allowed and encouraged to write the donor's family to thank them and to let them know about the recipient's life, circumstances, how receiving the organ has changed their lives, etc.  We will do this and I already have the letter simmering around in my mind.  Once we have written the letter, which can only contain first names and no location or any other type of identifying information, we give it to our transplant coordinator.

The coordinator gives it to UNOS (United Network for Organ Sharing), who oversees and coordinates all organ donations in the US.  UNOS contacts the donor's family and asks if they would like to receive our letter.  It is entirely in their court, though our coordinator tells us that familes usually really want to receive these letters.  They can decide to respond and let us know about their loved one, if they so desire and again, our coordinator tells us they are more apt to do this with recipients as young as Max because it makes them feel really good that a baby was helped by their loved one's passing.

I have no idea if we will ever learn any information about Max's donor, though I sincerely hope we will.  I think of that person and their family daily and thank god for their amazing gift. 

They've truly donated, not just an organ, but life to our Emperor... and to us.

best laid plans / toddler joy

Today I had grand plans laid out before me.  After taking Max and Ro to transplant clinic and to get labs drawn for Max, I was going to take them to the park.  Then Moose and I were going to attempt to take the boys to their first movie, either UP or the new Ice Age.  We were then going to come home, get them to bed and I had plans to watch a movie, eat some yummy salad and veg out.

I made it to the park and that was it.  That was it because I got a call from C. right after we got home from the park.  Max's labs were horrible.  They were so horrible that they could only assume there had been something wrong with the sample, but because they were so horrible they could not let it go.  My choices were to a) come back up and have them drawn again or b) try to go to the inpatient unit tomorrow morning, have them page Dr. A., have her enter orders, have them page IV therapy and wait for them to draw the blood OR c) go to the ER tomorrow morning and do the same damn thing.

Options B and C both sounded like the potential for an all day odyssey to the hill, so I had to scrap the movie plans and drive back up with the Emperor.  I don't mind saying that worrying about Max's lab values was a familiar sensation that I did not really enjoy experiencing again so quickly after transplant.  In fact, it threw me into a funk that I am only now just beginning to get over.

Incidentally, there is nothing wrong with Max.  It was the lab's equipment.  The second draw was absolutely normal, but I only just found that out now.

Dealing with this today made me realize how much stress I have let go of since the transplant.  I mean, yes... there is a great deal to do for him.  But, I don't have this sometimes debilitating worry coating everything all of the time.  I don't know that I fully recognized that the overarching worry was mostly gone.  This doesn't mean that I don't worry about him, because of course I still do. 

However for the last two and a half years, I think we have felt as if we were in this tremendous holding pattern.  We were, at first, doing everything possible to keep Max off of dialysis and to get him to transplant.  Then once dialysis began, it was this constant drive to keep him stable, healthy and to get to transplant.  Transplant.  Transplant.  Transplant.

Transplant was the ending.  Transplant has been the beginning.

I am much more settled about post-transplant Max and what caring for him entails.  I knew it would just take some time.  I am able to focus more energy on Rowan, which has been something over which I have suffered a fair amount of guilt since he was born.  I feel good about myself.  I feel good about myself as a mother. 

I feel proud of myself as a mother.  I am sure that soon there will be something else and I will kill myself over and over again with guilt.  But for now, I am going to savor the good feelings...

Revel in the happiness.

Throw the worry to the wind and enjoy my summer with my boys.   They will only be 2.5 and 1.5 once and I do so love them at these ages. 

Joy is my toddler boys.

the untold story

I am sitting on my back deck, trying to breathe deeply and shake off the experience I just had.  The experience was a maximus-in-full-screaming-rage from 34th and Salmon to 43rd and Division.  For those of you unfamiliar with this area, I would say it is about a mile's walk or very very close to that.  A mile of bloodcurdling screaming mixed with wild kicking and flailing.  A mile of stares.  A mile of stress.  A mile in which I wanted nothing more than to stop the stroller and turn and walk away.

That sounds terrible, doesn't it?

Don't placate me.  I know it does.

But seriously.  When you find yourself at the point where all you can do is try to breathe and over and over again you are trying to count to ten in a measured, even voice, all in an attempt to keep from screaming yourself.....well, walking away seems like the best option out there.

This is the reality of post-transplant life with Max.  This is the untold story, the story they don't really prepare you for before the transplant.  Something tells me I would  have been interested in knowing that my mostly angelic child would be transformed into a demon in the blink of an eye.  Yes, something tells me I would have wanted to prepare myself for that.

The cause of this is that most evil of drug:  the steroid.

It's not just that he has the most wildly fluctuating mood swings I have ever seen, it's that when he is in the throes of one, he seems 50 times stronger than what he normally is.  And the truth is that he IS stronger.  Let's just think about this for a second, ok? 

What do athletes take to improve their strength and performance?

Ok.  I rest my case.

The effect of the steroids does not alter simply because it is being used for something good: i.e. to calm down his immune system to combat rejection.  No.  It doesn't change.  And think about what it would be like to have a 2.5 year old dosed up on steroids....

Yea.  At times it is not fun.  Today was one of those days.  I don't know if it was because we had a very long appointment starting off the day up in the oncology unit getting an IV infusion, or what.  But this has been one of the worst of his days so far.

It's honestly not that he's like this ALL the time.  He's not.  But when something sets him off (i.e. there being no more peanut butter crackers for him to suck on and then spit out), look out...  You are in for a terribly rough ride... or walk, as the case may be.

Such is how my afternoon of walks and park ended with my two boys, with me immediately handing them off to Moose with an explanation that I could think about nothing but turning and walking away from the stroller (to which he chuckled in sympathy) and heading out to the back deck with a big, fat fucking glass of red wine and my blog.

It probably wouldn't have hit me so hard if I hadn't already been dealing with both Rowan and Max fighting beforehand, with them screaming at each other in Zupan's, with Max whining at me incessantly and refusing to tell me what he wanted (i.e. MORE TO EAT.. which he can communicate if he wants to), etc.

Ah well... I will take the steroid fits, as long as they are keeping that kidney alive and well inside Max.  It is just a bit difficult to take at times.  It's sometimes terribly difficult.  How are you supposed to parent when you know the full intensity of the rage occurring is something out of your child's control... something chemically induced?

I will tell you something... the next time you see a parent with a screaming, raging child in a grocery store, try not to judge.  Tell yourself that you have no idea what they are going through.  Remind yourself that it could very well be out of both of their control.  Give them a smile of sympathy and move on, please.

The accusing stares don't help.  No.  They don't.

the angels have spoken

Today has been incredibly lovely so far.  Hot, but lovely.  I took the boys to Laurelhurst this morning.  We were there by 930am to try and beat the impending heat.  We traversed the edge of the park until we reached our "ungodly hot weather" spot.  This spot is different from our haunt of last summer.  This spot could also be known as our "pouring rain" spot.  It is the place we go when we require the shelter of a dozen or more massive, old trees.

As we approached the picnic tables, I noticed there was a sign taped to one of the trees announcing the spot was reserved all day for a wedding party and then a second sign, announcing the wedding party would begin at 1pm.  There was noone there, yet.  But I didn't want to get caught there when people began arriving to setup so we moved down the length of the area a ways, still under the trees, but much further down from the picnic tables.

As I spread out a blanket on the grass in the shade, I looked back towards the picnic area and had a vision of what a wedding would like in that exact spot.  Moose and I did not have a big wedding.  We got married in our house, with 15-20 of our friends by a Justice of the Peace and 4 month old Maximus in attendance, as well.  We've talked about renewing our vows in the future with a larger (though still low-key) ceremony and I think I decided this morning that Laurelhurst Park will be the location.  This is a ways down the line, mind you.   But, I still like to think about these things.

Not long after we arrived, a woman sat down at a picnic table near us and within earshot.  She took out a book and some writing utensils, gave the boys and me a big smile and then proceeded to write.  I watched her for a few minutes. I am a notorious people watcher, by the way.  But then my boys grabbed my attention and I promptly forgot her.

Boys2 have two lawnmowers that fold up and fit in the bottom of the side-by-side stroller.  Moose bought them for them and they are the biggest hit of the summer, so far.  It is unbelievably cute to see them both running around the area pushing their 'lawnmowers'.  They did this for a long time.  We ate a mid-morning snack, kicked a ball around a bit and then played with the lawnmowers some more.  It was great fun and I was oblivious to what was going on around me.

At a certain point in time, Rowan began his 'run for the hills' routine, wherein he starts taking off and doesn't listen to me when I tell him to come back.  After three times of running after him and hauling him back, I decided we were done for the day.  It was 11:15, I still had two grocery stores I wanted to hit in a quest for good prawns and the heat was beginning to descend with a vengeance.

Rowan went into the stroller easily, which never happens.  Max was a different story.  After talking to him, reasoning with him, trying to get him to climb into the stroller without having to pick him up, I finally realized that he wanted to walk beside me out of the park, which is something we do sometimes.  I allowed him to do this and we set off for the path, me pushing Ro in the stroller and Max mowing the grass and then the path beside me.   

As we were about to leave the area entirely, I glanced to my right and noticed that same woman running towards me.  My first thought was that I had forgotten something, but I noticed her hands were empty.  I stopped, with what I can only assume was a quizzical expression.

She came up to us and began speaking, "The angels would like me to tell you that you are a wonderful mother."

It pains me to say this, but my second thought with regards to her was to try and ascertain just how loony this woman was.

"They know you doubt yourself, but you should not.  Your boys are terribly blessed to have you."

I glanced away from her to make sure Max was still beside me.  As I did, I responded "Thank you....Thank you very much."  I was feeling a little uncomfortable, as I am known to feel when people compliment me and I was still thinking this woman had to be just a tad left of center.

She must have noticed my demeanor because she began walking off, but said, "Please don't think I am just saying this.  It came from them.  It came from above."  She pointed to the sky and then turned around and walked away.

As I continued away from the area, there was this mixture inside of me of feeling oddly flattered and feeling as if she was truly crazy.  But I thought to myself, even if she isn't truly talking to angels, something about the boys and I sparked her to run across the grass and make sure I knew this.  It made me happy.

Later, I was thinking about a conversation Moose and I had last evening, as we were sitting on the porch.  We were recalling the difference between the peritonitis hospital stay and the transplant stay.  Moose reminded me of how difficult the peritonitis had been on me because I was convinced I had caused it.

And he was right.  I still believe I was to blame in some way.  I've had a hard time letting that go.  I didn't know what I was looking for at the time.  Dialysis was so new to us then.  I missed something very important and because of that Max became more ill than he ever has in his life.  I was thinking about it again this morning, thinking about how guilty I felt.  How horrible I felt.

And then this woman comes out of nowhere and tells me some higher power wants me to know that I should not doubt myself....

It was probably one of the most surreal experiences I've had recently (despite Max's transplant). 

The angels have spoken and apparently, I am a good mother.