Down Memory Lane

I took the long way to the oncologist this morning. Meandered down Jericho Turnpike to 347. Which meant I passed the following:

-The general practitioner's office where I went countless times during the summer of 2004 complaining of a cough that wouldn't go away, which then gave way to fevers, night sweats....
- The pulmonologist's office where I was told, "That isn't pneumonia" after another chest x-ray, and "you need a CT scan tomorrow". Where I was also told, "Well, whatever it is is treatable and curable" which made me much less fearful of what was waiting for me down the pike. What he saw on the CT scan was so bad that he didn't even charge us a co-pay for that visit.
- The thoracic surgeon's office, where we talked about possible surgery and later talked about a port install. It took me forever to remember how to pronounce Dr. Mohedrin's name.
- The now-vacant site for J&R's Steakhouse where I had my first real meal that tasted divine after months of not tasting food and not being hungry. What sticks in my mind most about that is a beautiful country breakfast (eggs, super thick bacon, biscuits, and potatoes) placed in front of me and just not even seeing food. Ironically these days I'm a (mostly) vegetarian. Mostly.

Then once in the building, I walk by the entrance to the "infusion center" where I spent nearly two (non consecutive) weeks having chemo drugs pumped into my system. I remember so much about those days - tucked under a blanket, PICC-lined arm hanging out to be monitored. I remember that no matter what, I insisted on wearing at least an "ensemble" of comfy clothes and always the brown sweater - big enough for my swollen and tube-plagued left arm- which to this day is comforting and cozy. I remember lots of chicken cutlets and barbecue potato chips (which I now can't even look at). I remember that they called the giant red syringe of adriamycin the "hair killer" and when giving me the (relatively) small syringe of vincristine saying, "here's the one from the beautiful flower!" (Which may be a contender for a future tattoo...just sayin'.)

I walk by the exam room where I withstood a bone marrow biopsy. (Dr. Berger says, "Okay, we're going to do a bone marrow biopsy to make sure it hasn't spread there." Me: "Don't we need to be in a hospital for something like that?" He just smiled.) I walk by the room where at my very last visit with Dr. Berger he met Lucas - just 3 months old and snug in a little carrier.

The exams these days are more of a visit with an old friend than a reassurance that the cancer isn't back. Julie and I share pictures of the kids (born 10 days apart!), talk about theatre and what shows are playing to take the kids to. Oh, and by the way, you're still healthy. I feel more like a visitor than a resident to Belle Meade Road. And that's fine with me.

The Season of Thankfulness Begins

I am lucky. As much as it hurts seeing Luke not engage or act like "neurotypical" kids, I am so thankful for how far he has come along. He's an empathetic, engaging, curious, loving little bear who captivated many many people last night while trick or treating. He wanted to know if dogs he met were boys or girls, he told everyone to have a good night, and had a little sing songy lilty "Trick or Treeeeat!" In fact my favorite exchange went as such:

Lady answering door: Well hello! And what's today little guy?
Lucas: (without missing a beat) It's Friday.

But one house stands out. It's a stunning, huge Victorian and we found the neat twisty path that led to the door. And all of a sudden we hear, "It's Lucas! It's Lucas!" and found one of Luke's classmates (indeed, one of his favorite buddies whom he mentions often) waiting on the porch. They could not have been happier to see each other. It was like Love Story, regardless of the fact they just saw each other hours before. Jude said, "Hey, c'mon in!" and Lucas followed his friend. We met his "Nanny" and his family. And they couldn't have been happier to see each other. Upon leaving Jude says, "Bye Lucas, I'll miss you!" And I just got teary eyed. Lukey has a friend who cares about him and wants to play with him. I couldn't be more thankful for his teacher creating such a loving environment for the boys or for encouraging such caring among them.

Life is what happens....

I used to think that that song lyric was just clever. Ha ha, it certainly does John ole boy. And then life happened to me: cancer, divorce, grad school too late, etc., etc.

I was sent this article on companies paying for women to freeze their eggs so they can be productive employees and not worry about something like, oh, reproducing mucking up their career.  I'm horrified. I'm creeped out. I don't know if I have a "career" per say, where I'm climbing up the ladder of greater success, but I'm trying to eek out something for myself now that I've found where I want to be. And yes, the thought that I want to get home at a reasonable time each night so I can do homework with Luke, and read to him and actually mother him and enjoy him is present in my thoughts. That leads me to wonder, is this my problem? That I don't want to work until 8pm every night and don't want to work weekends? Or is it a problem with American society? Am I lazy that I don't want that job? That I feel a job should entail 9-5 duties (or 8-4) and not overwork employees so they can enjoy some work/life balance?

And about freezing eggs. These companies make it sound like a pedicure. It's not easy. It's not simple. And it's certainly not fool-proof. When preparing to enter the world of chemo, I was advised to freeze some eggs as we didn't know what state my body would be in when we ended chemo. We had some (but not a clear picture) of how my cancer would react to chemo. Would we need more chemo? Even stronger chemo? (I had a pretty powerful cocktail) I called my insurance company and was given a litany of egg-freezing/harvesting procedures that would be covered and to what extent. This, on TOP of trying to navigate a new world of oncological treatment and all that new vocabulary (white counts! red counts! R-CHOP, drugs upon drugs!). And....not to mention I needed to start chemo, like yesterday. Luckily, my amazing life-saving oncologist put me on Lupron shots to put me into a chemical menopause. (Which was about as fun as it sounds.) It chemically froze my ovaries and protected the eggs. And it worked. Lucas is nothing short of a miracle, a fact that hits me every day. Which makes it a million times harder to say okay to a 50/50 parenting agreement and not have that little miracle sleep under my roof every night.My body went through all that and still produced a miraculous little boy and I have to give him up half the time?

Cancer. The gift that keeps on giving.

Faith, Love, and Harmony

I was raised Christian. More specifically, Christian Reformed. And recently we've been attending services in the church I went to as a girl. There's something comforting about that, especially attending services with someone who like yourself, questions the sanctity of the message sometimes, holds your hand while you pray, and tolerates you giggling when the hymn of the day is the same one that was in an episode of Mr. Bean.

While I question some of the tenets, and struggle with parts of the Bible, I still maintain that someone is keeping an eye on me. How else could I have gotten through cancer, divorce, and parenting a special needs child? (I also think there is no perfect religion that aligns with all of one's checkboxes, and take it with a grain of salt. I've taken a few quizzes on what "kind" of Christian I am and have come up with everything from Quaker to Episcopal to Post-Evangelical.)

To that end, I generally have a real easy time with believing that there's a master plan - it's almost like I have to, to come to terms with what has happened to me so far - both the good and not-so-good.

But sometimes, it's good to have the more concrete reassurances of my loved ones and friends, who can tell me that they've got my back in a no-nonsense sort of way.

Most often when I'm looking for "something" I can find it in the day-to-day: the smile on Luke's face when we're doing something fun together or I've made him laugh; the look Michael will give me across the dinner table as we share the end of our day.....but even more so in music. That's where I find peace and am able to submit myself to something even bigger than myself. Is that seeing God in the everyday? In my loved ones and myself? I dunno. What I do know is that a combo-mixture of all of the above help me get through both the day-to-day and the big stuff. And to me, that's what feeling blessed is all about.

(Another source of media that helps is Lamb, by Christopher Moore. I know it's fiction. But for some reason, that book helps me kind of decipher what religion is and what it means. And it's funny.)

Sometimes it just sucks

I'm generally an optimistic person. I'm usually one who can see the bright side of things. But some days it's just more....convenient to mope or be upset or worried. And when you pile a job search, on top of the capstone course of grad school, on top of working, on top of trying to delicately navigate shared custody....well, a girl can lose her cool. And wonder, "where on earth did I go wrong?"

And sometimes it's okay to just pull the covers over oneself, eat Taco Bell and chocolate, and drown one's sorrows in an episode of Gilmore Girls.

In the eye of the beholder

This past weekend was a Lucas weekend. On Saturday we took the train to see his cousins. We bowled. We played hard at the park. He had a great day. But there is always this impetus to squeeze as much as humanly possible into a Sunday, knowing that I'll have to bring him to his father's by 6 pm. Sundays feel a little like "Beat the Clock" because I want to make it as great as possible. This particular Sunday was slated for the Seafood Harvest Festival at a very nearby beach. Free boat rides! Free pony rides! Expensive mediocre seafood! And it was......okay. Luke was probably tired from the day before, I know I was. He had fun on the pony (very excited to ride the white pony that looked like Maximum from "Tangled"), loved the bounce house. But when we got back home, he asked, "Mommy, can we just spell words?" And wham. It hit me. The Lucas weekends should be about him. About what he'd like to do together. Not what I think we should be doing or that might be fulfilling. Now, the Seafood Harvest Festival was (mostly) free, so no harm, no foul. But I think I'll be reining it in on the weekends and making sure we're having fun because we want to, not to check a box, fill a quota or to keep up with the Joneses. (Who are these Joneses and why are they so fantastic?) The article below gives another perspective on this similar theme - not measuring up against anyone else but enjoying what I do with Lucas and giving him a voice in how we spend our time together. That's not to say I can't offer (and sometimes impose) an activity that I know he will truly enjoy, but not feeling like I need to make it the be-all and end-all "Meet Joe Black" kind of party weekend each time. Article: Facebook Makes Me Feel Like A Bad Mom

A Work in Progress

Parenthood is a journey. Not an easy one.

Being a parent is hard.
Being a working parent is harder.
Being a working parent who shares custody of her child is even harder.
Being a working parent who shares custody of her special needs child is hardest.

Luke is thriving. He's had a fantastic summer, his speech has made some great strides this summer, he's interested in playing with other children - all good things.

There are still meltdowns. There are still negotiations. There are still times I'm wondering, "Am I even doing this right?"

But I must say, I now know my Little Bear better than I did a few years ago. I gave up many battles. Why? Because it just ain't worth it. Why argue with Luke over having to fix things that are awry in the supermarket? Is it bothering anyone? No. Why argue with Luke over being cranky when 10 minutes in his room on his own, he has calmed himself down, and realizes now we can have fun/read together/have dinner?

I didn't get to this place easily. Sometimes I still have to remind myself, "It doesn't matter that he's tapping every roadside sign while we walk" or "It's not hurting a darn soul that he's plucking each dandelion".

He's still learning to navigate his world and I'm still learning to navigate overseeing his world.

Here's a great blog post that says this so much more succinctly thank I do:

http://musingsofanaspie.com/2013/01/05/the-importance-of-the-pasta-on-the-left/

I try to be like James' mom. I really do. Some days it's easier than others.

Open a new window

or.....climb ev'ry mountain, or......don't rain on my parade. Feel free to insert whatever show tune lyric that relates to new beginnings that you choose.

I've been inspired (or strong-armed, or.....nudged) into resurrecting the blog. For my well-being or the greater public's, I dunno. But it seemed wrong to continue blathering into the last blog I had that chronicled a life I stopped living.

What's different?

-I'm no longer married.
-I'm living in a (wait for it) mobile home (honest, they really do exist on Long Island).
-I have 50/50 custody of my amazing little boy. It sucks. For me. For the little bear, it's fair and gives him time with 2 parents that love him to the moon and back.

What's the same?

-Little Bear is still delicious. Still has special needs. Still makes me melt and breaks my heart every day in a million ways.
-I'm still a cellist. Playing for whomever will pay me. Which I guess makes me something of a cello 'ho.
-I still love food, so I'm sure that will be mentioned from time to time.
-I still get excited and happy over the tiniest things - whether it's a new soap from Lush or a cupcake. (See? Still a food-hound.)
-I'm STILL in grad school. But I finish in December. Which seems utterly surreal.

What's new?

-We have a cat. No, really. We do. And she's still in one piece. And she's pretty darn cute. Michael named her Iffy. Short for Iphigenia. Little Bear insists that's her name. Regardless of me wanting to name her something like Frida (a female cat with a mustache!) or Liza (Michael's other brilliant suggestion since she's a tuxedo cat).
-Michael. I could say a million things, and still be woefully missing something about how amazing that is. Suffice it to say, he laughs at my jokes, thinks Little Bear is wonderful, says the most perfect things at the right times and on our third (?) date engaged me in a Sondheim duet. Need I say more?
-I'm inching towards something akin to vegetarianism. Sort of. I don't think I'll ever be able to give up bacon or my dad's chicken cutlets, but there are more meatless days than not.
-And God willing I'll have a new job soon. Don't ask.

What am I going to blog about now? Whatever I darn feel like. Most likely the Little Bear and how life with (and sometimes out) him are challenging, fulfilling, awe-inspiring, and chaotic. The whole special needs thing is still throwing me for a loop sometimes. But I wouldn't trade him for the world. He's the best thing to pop into my life, that's for sure. Music? For sure. Gigs? hopefully. Food? For darn tootin'.

But one thing I have noticed in reading other blogs - sometimes it's just nice to read about someone else's journey and think, "I'm not going crazy" or "There's someone else out there going through the same thing" or "YES!"

So read if you want, comment if you feel and hopefully you can grab a "I'm not going crazy" moment of your own.

It's going to be better. (More on that in a later post)