quest for a faerie child

everything will be golden

Congratulate me, please.  I have managed to get my ass in gear and walk with the boys for the last three days.  In.a.row.  I know it is hard to believe, but tis true.  I finally had this epiphany this weekend.  It was a difficult point to reach, let me tell you.  But, I realized that it is absolutely pointless to use rain and the weather as an excuse for not getting out to the store, or the park or anywhere I have to travel on foot with boys2 in the stroller.  You see, I have been 'waiting' for spring before I began my spring/summer/fall excerise regime of walking all over creation.  That would be well and good if we lived in an area where there was a noticable difference between the aforementioned spring/fall seasons.

Alas.

We live in the PNW and fall = rain.  And winter = rain.  And spring = rain.  Whatever in the world made me think I could hold out for spring??  As if that would make any difference in the weather patterns of our area.  It will not.

Sure, there will be the occasional sunny, semi-warm day.  Sure, there may be longer stretches between rain.  But Dude.  It isn't even technically April yet.  Spring for this area won't reach here for another month, I would say.  And the rain probably won't end until the 4th of July.

It is time to get out there and start acting like a Portlander.  Brave the rain, sans umbrella.  Brave the chilly air.  Have fun.  Be outdoors.  Bundle up yourself and your kids and enjoy the glorious rain!

Whatever.  I don't really feel so cheerful about the weather.  But, I have to admit it wasn't bad walking amidst the misty rain.  We traipsed down to 20th to New Seasons.  Got some groceries and some red wine, traipsed up to Piccolo park, had some fun and took off for home when sprinkles turned to rain.  It was a nice rain, though. It was the type of Seattle/Hamburg/London rain I naively imagined when I first moved here.

Let me tell you, that type of rain is not generally the type of rain we get.  No, we get soaking, pouring, hailing downpours.  Or at least it has felt that way for the last 6 months.  Not today, though.  Today was fabulous.  I got great exercise.  My boys got fresh air.

My mood has greatly improved, if you couldn't tell.  Though, this could have something to do with the vast amounts of red wine I imbibed this afternoon while cooking.  It might have something to do with my mood.  I'll let you know in the morning what the verdict is on that subject.

Whatever the cause, I have released my stress, my fears for the moment and I feel distinctly better.  If this holds, things will be golden. 

Everything will be golden.

it's not becoming

Well....

I've been somewhat missing in action, now haven't I?  My excuses are many and varied, including but not limited to the following:

1. I'm in a bit of a funk.
   
2. Our babysitter left us in the lurch on Saturday, the one day I really felt as if I needed time alone with my husband.

3. Moose fell yesterday and incapacitated himself, which is no small issue for the faerie household.

4. Work has me in the dumps.  I just can't stand it lately and that is really ridiculous because I actually genuinely do enjoy my job for the most part.

5. I got my new Kindle 2 last week and have been burying myself in it ever since. funk + kindle = joyous escape.

6. I'm unbelievably fucking worried that something is going to fall through with our donor and that dialysis will be our inescapable reality for the forseeable future.

7. I really need a fucking vacation, something not likely to even be a remote possibility for at least 4 more months. Possibly much much longer if point 6 is actually true.

Oh wait... that last is not why I've been missing in action, it just explains points 1 and 4.  Though, I guess you could say my being in a funk and requiring a vacation because work is about more than I can bear, could be contributing to my absolute lack of creativity in the writing (read blogging, because I never write anymore) department.

Truly, my life seemed so ridiculously boring and depressing that writing about it, which generally tends to make me feel better, just made me want to go jump off a bridge.  Ok.  I'm exaggerating, as I am known to do here.  It's not that bad. I just need a break.

So tell me...

How does one take a break when one cannot leave the city for more than the daytime hours, can not leave the house at night, can not take a single day off of work?  And I'm talking break here, not an hour long massage.  Not an hour or two or four away from the kids.  I need a break.

Ah well...there truly is no answer there and the fact is, I'll be fine in a couple days I am sure.  But I've been wallowing in apathy and desperation (which sound like an oxymoron but truly aren't) since the end of last week and I really need to claw my way out of this ridiculous episode of self-pity.

As my mother and grandmother are known to say, "It's not becoming."

I would have to agree.  It's not becoming.  But, I guess you could say that sometimes shit happens and it isn't always pretty.  And I just linked two cliche's there, which points even further to the dirth of creativity surrounding me lately.

Max is accepted into Early Intervention

I posted an update to Max's site.  He's been accepted into a county program called 'Early Intervention', which is a free service.  They will send speech pathologists, occupational therapists and early developmental specialists out to our house every week to work with him on his development and to help us with strategies, as well.  I don't have time to post twice.  So, to get the skinny check out Max's site.

Also, our donor should be in the midst of the final exams and blood draws right as I am typing this.  Let's all think positive MATCHING thoughts today!

Shouldn't they...?

This post and the previous one should be categorized under This American Life as it relates to my own American life.  Perhaps I should call it:  This Faerie Life.  I was listening, once again, to a previous episode of TAL on my iPod over the last couple of days.  The theme dealt with babysitting:  what parents never find out about what actually goes on.

The third story, which I have yet to finish, was about a brother and sister in the 1940's, who wound up babysitting for two children that never really existed.  If that sounds cryptic, let me just say the underlying theme here and the impetus behind the deception was the disparity between the freedom given to boys vs. girls as they are growing up.

This disparity, this huge discrepancy, is something I experienced time and again as a child, as a teenager and something I never quite understood.  I grew up in a large family, a family of seven children total.  We were a family of steps and halves, three boys and four girls.  The oldest, a girl, is now in her early fifties.  The youngest of us, also a girl, will be 29 in May.  I am 38.

Growing up, my two oldest sisters were already out of the house and on their own.  My oldest brother was there for a period of time when our family first became a family, but then he was also out of the house.  That left my second oldest brother, five years older than me and my sister, 9 years younger than me.  We also had another brother (Dan) who was exactly  my age, but who lived with his mother.  He lived very near us, within a 10 minute walk and so we saw him all the time.  In fact, we went to the same school, had many of the same friends, etc.

I think my first understanding that boys were always treated differently than girls began during the summer as we were entering junior high.  My parents always had a summer house on a lake in Wisconsin.  They still do, though it is a different house, different property, but on the same lake.  If this makes you think we were wealthy, think again.  We were not.  I wouldn't say we truly ever wanted for anything, but we definitely were not wealthy.  We were distinctly middle-class.

We spent a good deal of the summer travelling back and forth between the lake and Waukegan, IL, where we lived.  When we would go up to the lake in those days, it was often my older brother Gregg, my brother Dan, my little sister Shelly, myself and then any friends we might have with us.

Gregg was allowed a good deal of freedom, as he was in high school.  My brother Dan would tag along with Gregg and his friends, and consequently was allowed that same level of freedom.  However, I was always very closely monitored.  Gregg and Dan were allowed to go out after dinner.  They'd walk down to the campground and promptly disappear for the evening.

If I tried that, I was always questioned:  where was I going?  What were my friends and I going to do, after dark??  What could we possibly need to do down at the campground??  "There's no need for you guys to go wandering off...", we would hear.

I always found that distinctly unfair.  Pointing out that Dan and I were the exact same age and in fact, I was actually 6 months older than Dan, never made an impression.  It was different.  I was always told it was just different.

I still don't know exactly why it was different, but at the time I recall the way in which I was always questioned, questioned suspisciously, left me with the unequivocal impression that girls who wanted to go out after dark were bad, were up to no good, whereas boys were allowed to do whatever they pleased. 

The same thing was true with regards to being allowed to stay back at home while my parents went up to the lake.  As a teenager, Gregg was allowed to stay home on those trips if he wanted.  When I reached high school age, I was never ever allowed to stay home.  Requests to do so, were again met with the same suspicious questioning.

The thing is, I was always and I mean always a good girl.  It would never have occurred to me to throw a party while my parents were away.  But I knew for a fact that my brother did.  I knew for a fact that he was definitely "up to no good" and yet somehow, that never really was a factor with him and the freedom allowed him.

This continued on into our college years.  I recall my mother telling me about how she and my stepfather had gone down to visit Dan in his first year at college.  They took my brother out and my stepfather actually allowed Dan to drink with him at a bar, at the age of 18.  I remember she did make a statement to my stepfather, "I don't want to hear you saying anything about Jennifer drinking a beer at the house around us after this."

Good for you Mom.  Though, the differences between boys and girls had been so drilled into me by that time that I accepted the disparity at face value and no longer truly questioned it.

Why is it so different?  The truth is that it isn't.  However, there were a lot of other factors at play in our household.  There were reasons why I was treated differently than everyone else and they are reasons that I am choosing not to discuss right now.  But suffice it to say that we had a great deal going on in our house, none of which had anything to do with anything I had ever done and had everything to do with my stepfather.

I was listening to this episode of TAL, hearing about how the girl in the story was followed whenever she went out and would receive questions when she returned akin to, "And where were you? And what were you doing??"

And that was my life, as well, except that it wasn't friends of my parents that followed me and reported back, it was my stepfather.  I can't even begin to describe how many times I would be out and about with my friends and would either see my stepfather, or would hear things later in a line of questioning that caused me to realize my every movement was being monitored.  This began as early as grade school and continued on through high school. 

It had the effect of making me utterly paranoid.  I began to feel, even when I wasn't doing something questionable, that I had done something wrong.  I wonder if anyone can understand how much that truly fucks with your mind and your sense of self.  Being constantly questioned about e.v.e.r.y.t.h.i.n.g makes you begin to doubt yourself.  It took me YEARS to overcome that and in fact, if I am honest with myself, I would have to say that I still struggle with it at times.

As I was listening to that episode, I was left wondering if all girls who grow up with brothers experience this or if this is something only people with a whacked home-life experience.

Whatever the case may be, I still believe it is incredibly fucked up.  Why should gender play such a role in how you raise your children?  Why should girls be made to feel they cannot be trusted?  Shouldn't boys and girls be held to the same standard? 

I mean honestly... shouldn't they?

the inability to see beyond the moment...

One of my absolute favorite things to do every week is to listen to This American Life.  I can't say that I always remember to turn it on, my life being what it is these days.  However, on the weekends I do remember, I am generally always riveted.  If you've never heard the show, I suggest you check it out.  It's on our public broadcasting station every Sunday at 10am.  But if you don't know what station NPR broadcasts on in your area, you can look up the show on google.  Previous episodes can be downloaded from their website and you can also get the show as a weekly podcast on iTunes.

Today I remembered to turn it on.  I turned up the volume so that I could also try to clean up the kitchen.  However the first story was so interesting, I found that even doing the dishes, I was missing key points and so I stopped doing it and just sat down with Moose in the living room to listen.  The first story dealt with a mother and two daughters.  It was the tale of the two daughters, who ended up running away for a long period of time.

The second was a reading from the journal of a teenager who committed an unspeakable act to himself, all because he had done something he perceived to be so bad, he couldn't face the consequences.  Moose was less enamored of both stories than he generally is, but for me, each struck a resonating voice for different reasons.

The first story struck me as a mother.  The second struck me as a it might a child or young adult.  It caused me to start pondering how it is when you are young, when you do absolutely stupid things and how you are completely unable to see your way out of them.  I think when we are young, we are unable to reason to ourselves.  We are unable to see things logically, unable to see that which will set us free.

After the show was over, I told Moose a story, a story I don't think I have ever told anyone else.  It was something I don't think I have thought about in years, but something that filled me with such shame at the time that I buried it deep.  And the truth is, it was really a ridculous situation I found myself in, a situation easily rectified and yet, I couldn't do it.

And this is that story:

When I was in grade school, I swam on a swim team through the park district.  I wasn't a particularly great swimmer.  In fact while I was in school, I participated in a number of different sports.  But, I was never particularly great.  My performance was rarely noteworthy and why I continued to participate, I truly have no idea.  I think it was probably a peer-thing, something to do with my friends, a reason to be out of the house.  My friends were always far better than I was and I think in some ways this left me always feeling like somewhat of an outsider.

Though, that's not the only reason why I felt like an outsider.  I was dealing with a great deal in my home-life and that left me always feeling quite alone, even when I was with my best friends in the world.  That's just how life was for me as a child, as a teenager.

Anyway, I was swimming on a swimteam when I was in sixth grade.  Every year the swimteam held a fundraisder called the "Swim-a-thon".  You would ask people to sponser you for every mile you swam in the swimathon, which took place on a weekend.  The park district swim team would take over the local YMCA for the weekend.  We would spend the whole weekend, even overnight there and we would swim the whole time, taking breaks in between to eat, sleep and socialize.  It was a great deal of fun.

It was far more entertaining than I ever found swim practice or meets, both of which generally left me with a stomach full of knots and that feeling of never being quite good enough.

After the fundraiser, I collected my donations like I was supposed to and kept them together in a manilla envelope.  At some point, we were supposed to turn them in.  But for some reason, I entered a period where I found swim practice particularly nerve-wracking.  I can no longer recall what had happened to put me in this state, but I can still recall the feeling of absolutely not wanting to go.  I think I pretended to be sick for a period of time so that I didn't have to go and then the period of turning in our donations had passed.

I honestly don't understand why it was that I didn't just turn the damn donations in late, but I think it was a matter of not wanting to call attention to myself and the fact that I had bailed on practice for so long.  I would bring the envelope with me and then get too nervous to actually turn them in.

It seems completely ridiculous to me now.  But nevertheless, I continued to hold onto them out of some unknown fear.

Eventually, the team held a banquet.  I think the purpose of the banquet was to recognize the star swimmers, as well as those people who had raised the most money in the fundraiser.  As you can imagine, the thought of going to this was more than I could take.  As a 10 year old, I was convinced they were going to point out the fact that I had never turned in my donations.  I don't think it ever occurred to me that adults probably would never point this out in a room of people.  I mean, what did they know?  Perhaps I hadn't been able to get anyone to sponsor me.

However, I was sick inside.  I was terrified this was going to come out and I was mortified about what people would think.  I tried to get out of going, but was completely unsuccessful.  I ended up going with my stepfather and the entire time, I felt like I was going to vomit.

Of course, they did not point out the fact that some of us had not contributed to the fundraiser in any way except to participate and to eat the food everyone's parents had provided.  But for me, I felt like even more of an outsider.  I felt like a sham for participating.  I felt like every great thing the coaches said about the team did not apply to me in any way, shape or form.

I think after that banquet I started to realize that noone was going to ever ask me about the money, but I still feared, in some way, that they would.  I took that manilla envelope of money, shoved it in a bag and buried it, my fears and my shame in the back of my closet.

When I think back on it now, I wonder why in the hell I didn't just turn the envelope in?  At any point in time, I could have given someone the money and I would have felt immeasurably better, even if that exact moment might have been uncomfortable for me.  But instead, I began to think of myself as a theif and I felt so ashamed of it that I buried it and never, ever spoke of it again...until today, almost 30 years later.

Eventually I did find that bag and the envelope of money and when I did, I felt all those horrible feelings once again.  I wish I could say I did something profound with that money, but the truth is I can't even recall what became of it.

I feel as a mother, I need to remember these stupid things I did and the snowball effect that caused me to hold all that inside, to berate myself so severely that I would feel I couldn't even talk about it even into adulthood.  We all do really stupid things as children, things we can't see ourselves out of.  But that's really only because we don't  have the life experience, we don't have the ability to see beyond the moment.  And I think it is really important for me to remember that as I begin this lifelong task of raising my own children...

This is the PNW

The weather was beautiful here for a period of time today.  The sun shone. The air was crisp without being bitterly cold.  In short, it had that spring-time feel, that certain quality you get when the dog days of winter begin to fade into the background and spring flowers begin to bloom.  We ran some errands early today and upon returning, I decided a walk with my boys was in order.

From the car, straight into the side-by-side they went and we took off towards Hawthorne.  My ultimate destination was Powell's in the hopes they might have some Portland postcards.  My sister is a first-grade teacher and her kids are doing 'Flat Stanely' right now.  One of her boys sent me a Flat Stanley and so I wanted to kill two or three birds with one stone:  get some exercise, get my boys out in the fresh air to try and combat the cold that is brewing, and pick up some Postcards to return to the Midwest with Stanley.

As I was walking, all the memories of our perfect summer and fall came rushing back, all the days of sun and fun, walking and more walking around Portland.  I was completely at peace, reveling in the lovely weather.

Oh sure, the boys began fighting a bit at some point and Max kept kicking off his shoes to the point where I just took them and his socks from him after I had to go back and search for a lone shoe he had flung off without my noticing it for the third time.  But, it was all good.  Life was good.

We have Sarah today and Moose and I decided to head out to Saturday Market by ourselves to enjoy the weather.  We parked and walked in, choosing to pick up lunch first: me,  a falafal pita and he, a philly cheesesteak sandwich.  As we were walking in, it began to cloud up substantially.  As we were waiting for his sandwich, it began to thunder.  As we continued waiting, it began sprinkling and then POURING.

At that point, we wolfed down our food and ran back to the car, as Saturday Market in a cold, rainy Portland is no fun at all.  None.

And that was our date.  And that was the end of our beautiful weather.  And that was the end of my lovely spring day.  At 2pm. 

Ah well....as I've said a billion times before:  This is the Pacific Northwest, right?  What more could you expect.  The fact that it didn't rain for half the day in the spring should be gift enough.

Time for That = ZERO

I've obviously changed the layout a bit.  There was a time in my life where website redesigns would have been generated solely by me.  There was a time when I would have painstakingly chosen images, generally those I had taken myself, messed arond with them in photoshop, using brushes, layering images and text, all to create a specific look or feel.  I then would have reworked the entire page (the entire site - back when I actually still had my own domain) in dreamweaver or even just in notepad, until it was perfect and uploaded the new look.

This was highly addictive to me and something I would have done once every month or two, because I loved, loved, loved designing websites.

Now, all I can manage to do is to search around in typepad's preloaded designs, find something I don't feel is completely abhorrent and push a button.  I must admit, I feel like a complete poser everytime I do this.  Every.single.time.  I have to force myself not to think about the fact that my individuality is gone.  I have to force myself not to think about the fact that thousands of other people could have the SAME layout.  I have to keep myself focused on the fact that while they may look the same, noone is writing about my life and therefore, it is not the same.

It is a minor distinction and really means nothing to me because it is the LOOK I am concerned with.  But, not concerned enough to actually take the time to do some graphics editing and HTML writing.  No sirree.  Time for that = ZERO in my world right now.

I added a list on the side to keep track of how many Max-related calls I make each and every week, mainly because I was curious to see just how many I actually do make.  Even as I am reading the list I JUST created, I see I already missed some.  And people wonder why I walk around with a blue-tooth headset attached to my ear.  My best friend never misses an opportunity to inform me I am going to get cancer, every.time.she.sees.me.with.it.in.my.ear.

One of Moose's friends always calls me some character from Star Trek.  The reference is entirely lost on me because, you see, what I know about Star Trek is equal to that which I know about cutting hair.  Next to zero.

I have an announcement to make:

My children are getting sick AGAIN.  Just kill me right now.  Please.  Rowan's going down faster than the Maximoose this time, but Max is trailing closely behind.  Runny noses, sneezing and crabbiness abound in the faerie house.  Hallelujah.

I love how the cold comes on the minute we put Max back on the donor list.  It's typical, truly.  Truly.  I also love when this occurs on the weekend, on a weekend when I had planned to try and relax, to not tax myself too much because the week ahead looks monstrously busy and I haven't even finished this week.  Ah well.  I suppose they could have waited until Monday and then went down.  That would probably have been worse.

I shouldn't complain, right?

I am just praying that Moose and I remain healthy.  Please.  Please.  Please.

Because, just like I said regarding website design:  time for that = ZERO.

We shall see

Whew!  Today was a day.  Actually, yesterday was a day, too.  In fact, yesterday was so much of a day that I couldn't even manage to focus enough to sit down and write about it.  You know those days I write about, where I go from one thing to another, every moment of the day until I am ready to collapse by the end of it?

That was yesterday.  Except for the fact that the only true running around I did was to take Maximus up to the dialysis clinic.  The rest was spent running around my house, chasing after my wild boys, working, attempting to make the billion and one phone calls I had planned to make on Monday, yet never managed to actually get around to.

I found out some information at clinic yesterday, which I truly need to post about on Max's site.  However, those of you who read me here, will find out first because I don't know that I have the energy to do both.

Apparently things on the deceased donor list are not looking altogether promising of late.  All the children, regardless of age, are waiting for long periods of time, far longer than was anticipated.  You see, there is a shortage of kidneys out there.  There are a variety of factors contributing to this situation. Strides forward in medical care are causing people to live longer, to survive things they wouldn't have survived even 10 years go.  The most morbid reasons why there is a shortage, though, have to do with things like: helmet laws for motorcycle riders, seatbelt laws and probably also a dramatic crackdown on driving under the influence.

You may or may not recall my posts months ago regarding criteria placed on pediatric donor matching for deceased kidneys.  One of the criteria they place is to match on one particular antigen.  When a kidney does not match on that antigen, the instance of chronic rejection (that is rejection that takes place over a long period of time, rather than acute rejection, which occurs rather rapidly) goes way up.  To combat this, patients are given higher levels of immunosuppressants.  Immunosuppressants will build up in the body over time and can cause their own issues.

So for pediatric patients, they always want to match on this antigen because it is assumed they will be taking these drugs the majority of their life.  If you will recall, it is this particular antigen that was causing an issue for Max and possible matches.  His antigen is rare.

I was told yesterday that the renal group at the hospital is about to have a discussion about relaxing that criteria for all their kids because the fact is, even when they aren't matching on it, kids are still waiting a very long time for a kidney.

The gist of this conversation let me know two things:

1. If they do relax the criteria and Max receives a deceased donor kidney, there is a good chance we could risk either chronic rejection or the issues regarding high levels of immunosuppressants.
2. We really need for our donor to be a match because if he is not, we could be looking at a far, far longer stretch on dialysis than we anticipated.

The only thing about this that gives me some hope is the fact that we already know in the two months Max was on the list, prior to dialysis, five kidneys came in that would have been offered to him if they hadn't been matching on that antigen.  Perhaps it wouldn't be such a long wait. Perhaps...

The reason they are thinking of making this decision is because technology is changing so dramatically, they feel as if the greater good would be to just get a kidney into Max and allow him to start developing at a normal pace, with the hopes that those things which are issues right now, might not be in the near future.

Max was placed on the list again as of today.  This means we are, once again, chained to our phones and even as I write this, I am realizing I am sitting here on the front porch, blogging my heart out and my phone is nowhere near me.

Gah...I can tell this is going to be hard to get used to again.

I want to thank everyone who either posted a comment about the transplant coordinator situation, or who talked to me personally about it.  I truly appreciate the support and the perspectives I've heard.  Sometimes I feel as if I am so close to the situation, so emotional about it, that I am unsure whether my thoughts are valid or are just those of a frightened, stressed-out mother.

So thank you!!

I haven't figured out exactly what I am going to do about the situation, but I am considering having a conversation with her, wherein I tell her how her statements affected me, how she made me doubt our donor, etc.  I'll have to wait for a bit to do this because I do not like having conversations of that magnitude when I am highly emotional, irritated, etc.

We shall see...

bring it on...

The word for today is 'blah'.  I've been attempting to put today's mood into words and honestly, all I can come up with is blah.  It is not as if I didn't have an extremely busy day.  It is not as if I wasn't up and going at the crack of dawn with barely a moment to think beyond my current task.  It wasn't as if I was bored.

The truth is, I think I am just feeling down about the latest in the transplant drama.  I have enough drama in my life in just dealing overall with Max and his health, with having two very young little boys.  It seems ridiculous to me that the one person who is supposed to have somewhat of an idea of what we are going through as parents, is the one person who appears to be causing the issue.

I feel as if I need to stop obsessing on this, but honestly, the more I consider yesterday's conversations, the more incensed I become.  It seems as if there was a deliberate attempt to make me think our donor(s) were beginning to waiver and for a period of time it actually worked.  For a period of time yesterday, I thought we might actually soon need to realize the transplant list was our only option.

And that was not a great place in which to find myself.  Let me tell you.

Eventually, I will move past this.  Eventually it will be supplanted by something more pressing, but for now, it is just a little difficult to move beyond.

I thought, perhaps, I was reacting too emotionally to the whole thing and so I asked my mom what she thought.  I had called her right after I talked to the coordinator and then again after I talked to my cousin. When I asked her if she had gotten the impression, based upon the first conversation, that our donor was waivering, her response was an unequivocal, "Yes."

Granted, I was relaying information to her.  She did not actually hear the conversation.  However, I have amazing recall when it comes to conversations, especially when I've had them only moments prior, especially when I am making notes in my mind to relay this information on to others, like Moose, like my mother, etc.

Although why I feel I need to sit here and justify my feelings on the subject is truly beyond me.  I guess I am just extremely confused as to why someone would do that.

Ohh.. I'm sure it was an attempt to save face.  But to save face at someone else's expense?  That's wrong no matter how understandable the urge is.  Right?

I need to move on.

I took the boys up to get Max labs this afternoon and got a full taste of what two wholly mobile little boys is like in a room full of people with multiple, differing areas of interest for said boys.  I felt like a ping-pong ball, bouncing from one area to the next and when I wasn't physically moving, my head was turning quickly from side to side.

It was amusing.  It was highly enjoyable.  It was mildly exhausting.  It caused me to wonder what our park outtings are going to look like once the weather settles down a bit.  All I could truly come up with to describe what I might experience is chaos.  Joyful chaos, but chaos nonetheless.

But I am so ready for a good healthy dose of spring sans the rain.  I can't wait.  I can't wait to be chasing after both of them, playing with them, watching them play.  Bring it on.

Just bring it on.

We could have it much worse...

I am feeling a bit worn today.  I am feeling worn, psycshologically.  I feel like I spent the entire day on the phone.  And honestly, I almost did.  Between work and Maximus, I actually came to a point towards the end of the day where I couldn't fathom spending another second in conversation with anyone further.

And if you know me, you know that is a state almost impossible to achieve.

The first half of the day was spent in consultation both with work and with the dialysis nurse due to a little problem, known as Max's blood pressure.  It's been running from mildly low to VERY low over the last couple days.  We are trying to manage it throught the dialysis therapy until Max's clinic appointment on Wednesday, but I truly suspect it is a fluid issue.  We shall see...

The second half of the day was spent on the phone with the transplant coordinator, my mother, my cousin, and my mother, again.

You may recall how upset I was last week regarding the absolute lack of progress on the transplant front.  I did talk to the transplant coordinator last week and was extremely tactful.  The gist of the conversation went something like this (the condensed version):

Me:  I'm wondering where things stand.  Our donor and his wife are getting very frustrated.  They are having difficulty with the Arizona coordinator, who says she doesn't have the paperwork.  We are trying to make arrangements.  My donor is frustrated.  My donor is frustrated.  Frustrated.

Transplant Coordinator:  The paperwork was sent.  Oh, they don't have the paperwork?  Well, it was late going out.  I haven't heard from the donor/donor's wife.  I didn't know there was an issue.  I'll call them and call you back.

I didn't receive a call back last week, but that is ok.  I found out later that day Michael and Kerri took their kids on a spur-of-the-moment trip to Disneyland.  I talked to Kerri briefly over the weekend and she indicated she would call the coordinator back this morning.

I received a call around noon today from said coordinator and the conversation went like this:

Coordinator:  I talked to Kerri today.  She seems angry.  I understand the AZ coordinator is saying she doesn't have the paperwork.  We decided to cut  her out of the process and I'll deal directly with the departments in question.  Kerri seemed like they aren't ready.  I asked her if they needed a couple months to get things straightened out.  She said they can't do the transplant until the end of May, but that is ok because the doctor's schedule is weird the next two months.  The end of May will work better.  I was wondering if you would like to bring Max in to get a PRA drawn and put him back on the deceased donor list until things get more solidified.  Oh, by the way, Kerri said you were angry at me, too..

Me:  Yes, we want Max on the list.  I go in for labs tomorrow. We can draw the PRA then.  The end of May?  Ok.  No, I am not angry with you.  I've been frustrated with the process and the length of time it is taking.  I just really want Max transplanted.  I am beginning to get worried he is going to get sick again.  It is extremely difficult to keep a curious 2 year old from messing with the catheter site, from removing the catheter cap.  It's just difficult.  I just want him transplanted.

Coordinator:  I want him transplanted, too.  Probably not as much as you do, but very close.  We are going to be working together for a very long time.  I just would hate for it to start out with negative feelings. 

Me:  I don't feel negativity.  I was just frustrated by the process.

After this conversation, I was feeling really irritated with my cousin.  I didn't know why she would tell the coordinator I was angry with her, even if I had been, because I do have to work with this woman until Max is no longer considered a pediatric patient.  I was also irritated that I had to find out they wanted to delay the transplant till May from the transplant coordinator and not from them.

Then I talk to my cousin....

Kerri:  So, I talked to D.  It was a very interesting conversation.  I told her we were frustrated with the AZ coordinator and that she doesn't have the paperwork.  D. said she sent the paperwork and then I had to remind her that she had even told Michael the paperwork had been sent late.  She remembered that and responded, "oh, that's right."  I went on to ask her what the deal was.  What were we really looking at in terms of a date?  I had to keep asking her over and over before she said that the doctor's schedule was really crazy.  She said he was available at the beginning of April and then not again until May.  I responded by asking how early April would be possible when we can't even get Michael tested until the end of March.  Would that really be enough time?  She said, "No, probably not."  So, I said, "What are we looking at then, May?"  She said that May would be better.  I then told her our daughter will be in school until the 22nd and I did not really want to take her out that close to the end of school, but that we could be there on the 23rd, if we needed to."

At that point in the conversation, things were beginning to crystalize in my mind of just what had occurred in both our calls with the coordinator.  But what sealed the deal, was when Kerri went on to say this:

Kerri:  So, then I said to her:  Let me ask you something.  I know you said you took Max off the list in January because Max had peritonitis and because Michael was far enough in the process to be considered a viable donor.  However, now you guys have been dragging your heels for months now, we're not even looking at possible transplant until the end of May, why in the hell would you not put him back on the list?  Poor Max. What if something were to happen?  What if this were to fall through and here he and his parents have been waiting for MONTHS due to all this beaurocracy and due to doctor's schedules, etc.  What then?

According to Kerri, the coordinator fumbled around a little bit before saying they could probably put him back on the list.

The final key to the puzzle was when I told Kerri the coordinator had told me she said I was angry with the coordinator.

Kerri:  I did not say that.  I didn't even tell her we had talked.  I said Michael and I were frustrated and I was sure you HAD to be frustrated, as well.

At that point, I really just began to feel entirely defeated.  It was clear to me that the entire conversation with the coordinator was a matter of her "covering her own ass".  I loved, loved, loved how she twisted the conversation and ommitted important details to make me think Kerri had first indicated they didn't know if they could do this right now and then to think she had backed away from that and settled on end of May, when in fact the entire conversation towards May was directed by the coordinator, herself.

Furthermore, I was astounded at how she conveniently left out the fact that placing Max on the list was Kerri's idea because Kerri had shamed her into realizing they are completely dicking around and the only one who is losing in this is baby Max.

I believe her statement regarding my being angry with her was to see just how much trouble she could be in.  I think she was testing the waters.

The whole experience has really just left me feeling disgusted.  I truly despise when people don't just own up to their own screw-ups.  I mean, if you've fucked up then admit it.  I am highly forgiving of people.  I understand that everyone is human, that everyone makes mistakes, that everyone drops the ball from time to time, especially me.  I drop the ball and I do it more often than I would like to.  But, I always take responsibility for my fuck-ups.  It's not easy, but you know...it's the adult thing to do.

Having a conversation like she had with me today feels highly duplicitous and I don't deal very well with that.  I don't deal very well when I encounter it in my own business, but when you are talking about something that involves my son, you've just entered an entirely different arena.

So, this is why I am feeling worn.  I feel as if something I have intuited over the last 6+ months, but which I had been berating myself for feeling, is actually true.  And, I am incredibly disheartened that I am going to feel as if I always need to watch out for this woman from now on.

However when I get to feeling like this, I try to think about the fact that there are people out there who have it far worse than we do.  And in fact, my mother and I were discussing just such a person much earlier this morning.  I haven't thought about this in years, but today it hit me like a ton of bricks.

A friend of the family, a woman who was one of my mother's best friends for years and years, had a baby about a year and a half before my mother had my younger sister.  I was only 7.5 or 8 at the time.  While in the delivery room, the head nurse and doctor were actually inebriated.  The baby got stuck in the birth canal and was deprived of oxygen for an ungodly length of time.

The baby, a boy, survived but was very soon diagnosed as having sustained brain damage. The damage was so severe, his parents were told he would never develop beyond the mental age of 3 months.  He was also blind, as a result of the damage.  He was projected to not live past the age of 4.

The ensuing lawsuit was the largest settlement in the history of Lake County, IL.

As I said, he was projected to not live past the age of 4.  He is now 30 years old and lives in a 24/7 residential facility for people with mental disabilities.  He still has not attained a mental capacity  beyond the age of 3 months, cannot sit up on his own, is still blind, can do absolutely nothing for himself.  HIs mother brings him home once a month, every month, for a weekend to care for him. She has done this every month of every year since he was born.  He has never lived with them.

He was their first child.

So, whenever you think you have it bad, think about this story.  It's been years since I've thought about it, but this morning it was gut-wrenching to me.  I guess I haven't thought about our family friend and her son since before I had Max.  Now that I am a mother and more importantly, now that I've had two years experience dealing with Max's health, I cannot fathom how she did it, how horrifying it must have been and what it must be like every single day that goes by.

We could have it much worse.  We truly could...