April Showers

Some days, it takes a lot of external support to remind me that this is what life is like. Sometimes it all feels so unusual and makes me feel like I am absolutely alone in my circumstances. Firmly grounded in the belief that things could always be worse, I waiver between guilt over my self-pity and gratitude over waking to see another day.

And then I go to therapy. I pay good, hard-earned money to have a heart-to-heart discussion with another human being to reassure me that I am navigating through everything in the best way I know how at any given moment. My therapist delivers this message perfectly each and every time, and yet I always seem to lose the sense of his message as the week or so wears on.

I cannot say enough about my therapist. I wish I would've started earlier, maybe I would've avoided a few pit-falls along the way. I'm almost a year into it and every time I feel like maybe I've done enough therapy, I realize that it's probably best to continue going, continue talking and exploring, continue writing that check.

My brother's condition still consumes me. It's been a little over five months since the world came crashing down and he has made remarkable progress. The sequelae of the ordeal is still very much alive and kicking today in the form of tremendous pain in his feet and lower legs. The nerve damage in those areas was extensive and he still suffers a lot from it.

And I feel a little bit defeated about life over this, and over other things. Is this what growing up means? That people die and get sick and you are left to deal with it? I am still figuring out life as a widow with two kids. I still get random flashbacks about anything and everything concerning Rob's passing. I ruminate over what happened with my brother and what I could have done to prevent it. On top of this I'm juggling kids, chores, work, paying bills, planning for the future.

Sometimes, I just want it all to STOP. Just stop already.

I wish I could rewind time. Go back to a place when there was some sort of peace and simplicity. A time when we were all healthy, alive, and happy.

However, there was no such time to rewind to. At any given time we may have been those things, but not all simultaneously. When I was not yet a widow and I did have a nice house with a dishwasher and everything, Rob was sick and my brother was beginning his path to destruction down in Glassboro. Rewind earlier and my brother was still some-what innocent but suffering in his own way, and Rob, who I didn't know yet, was dealing with his first failing marriage, and I was being tormented to shreds by my ex-boyfriend. Rewind earlier than that, and we were children and dealing with a fantastically dysfunctional home-life.

So let's not rewind. There was no perfect time. There is nothing to be nostalgic over, even though my mind wants to trick my memory into believing so.

It all boils down to now. It always does. Now is the only moment I have any control over. All I can do is keep trying, but remember, I'm paying good money to be reminded that I am doing the best I can...right now.

In Like a Lion

So I never did make it to Jupiter, FL last month but that's ok. Florida will be there unless some major weather catastrophe occurs and the temperature of the Earth rises to such a degree that the entire peninsula returns to it's former state of submersion under the sea.

Hey, it's happened before and most likely will happen again. This isn't projected to happen in my lifetime. You never know though, right?

Whatever, I'm starting this off with a digression but it's very late and I was awoken from my melatonin-induced slumber by teenage drama and my brain is all over the place.

A lot of things are going on but aren't they always?

First, I need to get the hell out of New Jersey. What was I thinking? Actually, the move back has been beneficial because I am functioning better now that my life rotates around a more normal Monday through Friday routine. I do benefit from working and I really can't imagine how that could have happened while living in Spring Hill. I feel a closeness with my supervisor that would've been hard to match anywhere else at that time and that has made all the difference. To be around the familiar faces, the people who's life stories I have had the priviledge to share, those are the things I craved so much while I was away. My return has built me up into a stronger and better person than I was while I was gone.

But seriously? New Jersey? Why do you make it SO DAMN HARD? The traffic! The taxes! The expense of everything, not just money, but time and patience and mental stamina. I seriously can't take it anymore. Well, I actually *can* take it but it's only because I have a plan to escape your oppressive ways.

Naturally, I will move back to Florida after certain things have come to fruition. I need my parents. I need to be near my brother. And frankly, I just need a break from the madness that is NJ.

I have a special relationship with Florida, that's for sure. I broke my ass to get down there, only to have my dreams shattered into a million pieces. I have spent hours upon hours getting to know Florida. I have poured my heart and soul into learning it's rich history, learning the lay of the land, studying it's topography and lores and myths and economic trends in order to find a home. Not just a house, but an actual home in this place. And it has been both good and evil to me.

My relationship with this place is one that I wrestle with daily. It does not go away. Florida calls out to me, and yet I can't help but be a little mad at it over what I feel it has taken away from me. I work on this mentally every single day. I don't know if it's irony or fate, but the past three men that I have fallen in love with are also lured to this place that is Florida. But even putting that fact to the side, I myself am in love with it.

There is a special connection that I have with it. And let's be straight: it's not the Disney aspect of Florida (barf), nor the lack of snow (because I love snow) or any other touristy reason one would love Florida. It's something much deeper than that, something I can't exactly describe at the moment. It has a lot to do with my family being there while I feel stranded up here. It has a lot to do with unfulfilled goals and dreams.

It's got a lot to do with unfinished business.

And now the melatonin is kicking in again...

The Heart House

Penny had her last cardiology appointment for hopefully a long, long time if ever. She had her last echocardiogram and passed with flying colors. We are now able to close the door on this issue.

To back track, Penny's dad was born with a very serious heart condition called transposition of the great vessels. Basically, the main arteries leading out of the heart are leading in total FUBAR directions and without surgery most babies would die within a few months if not a few hours. However, by the grace of medical technology, Rob was able to make it through 37 years of life. These days, I believe that kids with TGV will make it longer because the surgeries have been refined. Rob was one of the first to have certain surgeries to treat TGV and his life undoubtedly contributed to medical advancement.

There is no question.

Given his history, the only thing to do was to undergo certain tests during my pregnancy to ensure that I was carrying a relatively healthy baby with 4 distinct and functioning heart chambers with 4 relatively healthy valves with 2 main arteries leading in the right direction. Penny was able to have most of those things but she did have a mitral valve that didn't close quite perfectly after each contraction of her heart. Not a gigantic deal and it may not have ever been picked up if they weren't actively looking for something.

However, after she was born, another small issue was picked up. Penny had somewhat of a patent foramen ovale, a small opening between the right and left ventricles that is totally normal for fetal circulation but which typically closes during the first day or two of life. Usually it closes spontaneously upon the first inhalation of air after birth. It's like a magic switch in your heart that says "now I am a fetus" and "now I am an independently breathing organism."

So hers didn't close for a while. Some people's never closes. Most do.

Her did.

And her mitral valve has become strong enough to shut tightly closed after each beat of her heart, preventing any back flow of blood into her system.

*****

I'll drop the technical jargon for the more human side of all of this.

Rob would've been thrilled to know that he could make a baby with a perfect heart. That would have been the cherry on the whipped cream of the delightful morsel of life that Penny was to him. She was, and will always be, the greatest contribution he ever made to life.

The people at the cardiology center were very kind. The doctor was beyond sad to hear about Rob's passing. He really took it to heart, saying that for them it felt like a tremendous loss. He studied at NYU were Rob had all of his surgeries, studied under the doctors who cared for Rob over the years. He was obviously and genuinely affected somehow by losing one of what he thought was "his own" in terms of patients, even though he never dealt with Rob.

The nurse in me came forward and explained that when Rob was born he was given a prognosis of 6 to 12 months. Months. And that through the hard work of people just like himself, this doctor, Rob was able to enjoy 37 years. Years. And here is the baby that is the result of that. So thank you.

I have gotten uncannily adept at breaking this news to people. I always anticipate it before it happens, I prepare my face for the moment, I break the news, and then I reassure everyone that it is Ok. However, I knew this appointment, and the moment that it would bring, would be especially poignant. And I walked out of there with excellent news about my daughter.

Overall, and I can say this with all certainty, life has been better to me than it has been bad.

*****

Also, I might be going to Jupiter, FL on a really spur of the moment deal. Every cell in my body says GO GO GO and yet I need to sleep on it one more night in case some little voice in me says no...no...no... I hope that doesn't happen but it's super-short notice.

Nearly two months...

have passed since the last post.

My brother only needed the porta-cath for a few days and a few more dialysis treatments before producing urine and excreting chemicals sufficient enough to be safe for life outside of the hospital. He underwent a nuclear stress test that proved to his doctor that there was no damage to his heart. The porta-cath was removed and he was able to go to my parents new home.

The problem now is neurological. He has a lot painful pins-and-needle sensations in his feet and occasional, random shooting pains in his legs that take his breath away. The go as fast as they come and there is no prediction of when they will occur.

Let me discuss the high points though.

I flew out to Florida with the girls on December 23 because there was no way I was spending Christmas away from my folks. My brother greeted us and demonstrated how was able to amble around without the walker. His gait wasn't steady, fast, or graceful but it was bona fide walking without the walker. Having seen my brother learn to walk once before, 26 years ago, and seeing it again now was a bit of a mixed bag emotionally. I definitely cried, and for at least two reasons. I was both delighted that he could walk independently, at least a little, and so sad that he even had to re-learn this skill in the first place.

Plus, the thought of him living in pain is almost unbearable for me to consider and yet it is so.

The next day we went to the seafood store that had five live lobsters on special order for us to pick up for dinner on Christmas day. The plan was surf and turf, twice baked potatoes, and a few other sides. I tended to the lobsters every couple of hours to make sure that they were alive and that their environment was sufficiently moist and hospitable until the next day when we plunged them into a boiling pot of water.

On Christmas Eve, Penny slept in with my parents in their bed. A total grandparental indulgence, but I didn't balk. It made everyone happy. Penny worships all four of her grandparents and doesn't get to see my parents enough anyway. There was no tearing the three of them apart.

Christmas morning, I woke very early from the morning light. It felt quiet, much too quiet. Tears very gently came to my eyes as I realized that the quiet was from the absence of someone, someone who was always up early and not very quiet himself. Eventually I heard Penny making some wakeful noise in my parents' room, and then start to stir, and then the typical Christmas morning chatter that small children inevitably make, the kind that precedes the noisy opening of presents and exclamations over how generous Santa was this year.

During those moments, I felt so grateful that at least Penny had my parents this year to wake up with since she did not have me and her father to wake with. Mixed in were feeligns of jealousy and joy over my parents' fortune of waking up next to each other for the past 39 or 40 years. Maybe not jealousy, that just sounds wrong, but I don't really know if there is a specific word for the complicated feeling I held for their situation. It certainly wasn't vicious, like envy. It was more like a thought in my head that said, "those people might not have any idea of just how lucky they really are."

The momentum of Christmas morning quickly dashed the acuteness of my feelings of loss away as we woke up Jon and Sadie. It lingered in the background most of the day, just below the surface of everything but not interfering with the joy. It was always right around the corner, even as I boiled lobsters alive and scooped the interior out of the potatoes and poured the wine.
Still, this was the most manageable holiday yet and certainly the best Christmas I've had in years.

The following day, my brother and I met up with childhood friends who happened to be visiting family in St. Petersburg. What a delightful coincidence that we were able to get together. They have both grown into wonderful, interesting people. The older brother, who I spent a great deal of time with during middle school and early high school, designs shoes and has lived in interesting places all over the country. He still retains a love of the Delaware River that rivals my sentiments. The younger brother is studying to be a doctor, an osteopath to be exact, and gave me a quick adjustment of my neck in the parking lot that was gentle and felt like fitting pieces of a jigsaw puzzle into their rightful place together.

My brother spent more time in a vertical position that evening than he had in months. Before meeting up with them we had a lovely dinner together. The venue of our meeting was a really great place in north Tampa near the university that served food, had a bar, and featured live music. I think my brother's meeting with the younger brother studying medicine was a positive encounter and he paid a lot of attention to my brother's story and was extremely encouraging.

And he had a beer. Like a grown man would have a beer. And it was wonderful to have a beer with him and just...be alive together.

All in all, it was simply lovely.

I was so sad to leave that Monday after Christmas, not just to return to a short and hectic work week preceding New Year's Eve, but mostly because I miss my family tremendously. I even miss Florida slightly. Ok, more than slightly. It was a bit cold there, but it wasn't a bitter cold. It wasn't the sort of cold that turns me into a hermit. The night before we left, my brother took Penny and I out around the neighborhood in the golf cart to look at the Christmas lights. It was chilly but tolerable.

My brother and I had so many conversations, in-depth conversations about everything: our lives, our blessings and our obstacles, how things may or may not have gone if things had been different, our childhood, our family, and the future. During the visit I just felt so in touch, in-tune with him, and I really came to the realization that for both of us, whatever tragedies have occurred...well, this is the way our stories are supposed to go. These are the words that are written and there is no erasure allowed. It all depends upon how we re-tell the story that matters.

Mostly there was just a profound awareness of how we both came so close to the edge, maybe in different ways, but again, so close to the edge we dangled.