Monday, August 12, 2013

Party with the Onc moms...

It is unconscionably late, but I could not let the moment pass without documenting my day today. I have fired up my laptop, because while being able to blog from my smartphone is very cutting-edge and high-tech, it wasn't the same. I am a writer, I need the scratch of pen on paper, and failing that, I need the satisfying click of keys. I need to be able to type without worrying about errant typos and autocorrect, the worst invention known to man! So, I have turned on the laptop for the sole purpose of blogging, because my day was so blessed that I just had to share it with all four of you who actually read this! :)

This morning was hard. I'm not sure why, exactly. I'm never really sure why anymore. While there may be many inconsequential reasons on the surface, the bottom line is I just big fat miss my daughter. I miss her smile and her laugh and her boundless energy, and I am lost without her. I try my best to seem like I have it all together, to not have full-blown panic attacks in public as errant memories hit, but sometimes, it's not as easy as I want you to believe it is. And no, I am not fool enough to believe that I am actually fooling anyone, except maybe my ex, who sees the occasional picture on Facebook of me smiling on a hike or out with friends and thinks that I have found happiness while he wallows in misery without our daughter. But while I am able to find scraps of happiness in the small things (like hikes and dinners with my amazing friends), on most days, I am trying to find the fucking will to live. Today was such a day, for seemingly no reason.

I just got in from Florida two days ago, on Friday night. So naturally, I spent Saturday mostly asleep, thanks to jet-lag. I did manage to go for my walk in the late afternoon, because my mother refused to let me diet while we were on vacation and I came back five pounds heavier. Oh, HELL NO! I am now happy to report that a sauna belt and a ton of water later, I am back to where I was before, thank Christ! Today, I had a birthday party scheduled for Elias, one of Sarah's friends from the hospital, a fellow oncology patient, and the most amazing little boy you will every meet in your life. He is HILARIOUS, with a wit and a charm that denotes a boy twice his age. His little sister, Savannah, was Sarah's best friend. He is amazing, and I love him, so of course, OF COURSE, I would not let anything stop me from going to celebrate his birthday. Birthdays are even more significant for oncology kids than "normal" ones. Nothing could stop me from being there, except maybe a little bout of depression.

I'm not even sure what it was. Maybe it's because it was a birthday party, and I will never get to throw another birthday party for Sarah ever again. Maybe it's the sudden overwhelming feeling I seem to get in large crowds lately. Maybe I just big fat miss my daughter and so nothing is right in the world without her when I get like this. Whatever it was, I was having a really hard time getting out of bed, or getting anything to eat, let alone getting ready for the party. I forced myself to work on some orders I have for Sarah Bear Designs, and that helped a little, once I got into my zone, but there was still that feeling. I was dragging my feet. And left to my own devices, I probably would have skipped the party, and I'm sure everyone would have understood.

But my onc mommies are amazing creatures, and just when I have decided that I can't go, I get a text from Amanda, Julian's mom. Julian was the love of Sarah's life. I know they were only five. But if there was ever proof of soulmates on this Earth, these two were it.

I know they were five (Well, Julian still is). But if you can't feel the intense love between these two, you officially have no soul. Anywho, Amanda is Julian's mommy. She texted me and asked if I was coming to the party, because she and Julian had just arrived. I explained to her that I wasn't sure, she said she understood, and just in that brief encounter via text, I instantly felt better. Being a cancer mom is more than just you and your kid. It bonds you with the other mothers. It's a club that no one wants to join, but once you're in, you're in for life, and you are forever family. You are more than just friends. You are sisters. They understand you like no one else can. because you share a common bond.

I decided to push through, and I got into the shower and got ready to go. Once I got there, I was so glad I did. Being a cancer mom is a full time job. Scratch that. It's like three full time jobs. You can't plan anything, everything revolves around your child and their illness. This is something we all understand and forgive, but the unfortunate downside is that it keeps us from getting together as much as we would like to. So, immediately, I was glad that I came because I got to be around some of the most amazing women I have ever known. Andrea, Elias' mom, hugged me immediately, told me she was so glad to see me and asked if it was hard for me to be there. I didn't really answer, but she knew. She assured me that she wouldn't be offended if I needed to excuse myself early. That alone, the understanding and unconditional love without need of excuse or explanation, gave me the strength I needed to stay. That, and the fact that Amanda D., Anaya's mom, is crazy hilarious and I had forgotten how much I missed these women until I had them in front of me.

I no longer need to go to the hospital. Sarah is gone, so there are no more playdates, I am no longer a cancer mom. No more cancer, no more mom. But as Andrea says, you are a cancer mom for life. There is a reassurance in knowing that our children and their illnesses may have initially brought us together (as well as Amanda, Anaya's mom, and her propensity for hugging strange crying women in hospital hallways! lol This is how she met both Andrea and me!) but it is love that holds us here. I have an overwhelming abundance of love and support, but I could not get through this without the support of these women, my fellow Cancer Moms, or my "mommies" as I call them. I need these women in my life.

And, I need the kids, too. Elias enjoyed his birthday immensely, but wasn't feeling well by the end. He perked up some with the twenty I gave him because I hadn't time to buy him a present! :) Savannah informed both of her parents that she was spending the night at my house, without informing me, until it was made clear that she would not be retrieved in the middle of the night this time, like the last time she tried to sleep over with Sarah. Anaya sidled up next to me on the couch, and asked me why I didn't bring Sarah. I told her that I couldn't, because Sarah was in Heaven, and she said simply, "Oh." Then, after a pause, she said, "You know I miss her a lot, right?" I had to smile, and then I said, "Yes, I know, baby." Then, in true, sassy, Anaya fashion (she and Sarah were friends for a reason), she says, "How do you know?" To which I replied, "Your momma told me." "Oh." she said again, before she scampered off to find Savannah. Julian tells me every time he sees me how much he misses Sarah. These kids have suffered more in their short little lives than most adults, and still they are happy and hopeful and wise beyond their years. They are the reason why I can't go back to teaching full time. My heart just isn't in it anymore. My heart is at that hospital, with my baby, with the friends who loved her so well.

As heart-breaking as the events of the last four years have been, I wouldn't change them. My mother always said something good always comes from something bad, and as usual, she was right. From my shitty marriage, I got the most gorgeous and amazing daughter a woman could ever hope for. From her birth, I got the contentment of a wish fulfilled. From her illness, I got strength and courage, which I learned from said daughter, and I got a sorority of women who have shown me the meaning of true friendship. And I will forever be grateful.

The Onc Moms in attendance at the party. From the left, Andrea (Elias' mom); Cynthia (Ricky's mom), Amanda F. (Julian's mom); Me (Sarah's mom); Amanda D. (Anaya's mom) and Rosemary (Aaliyah's mom)

Andrea, Amanda, me and Amanda! Love these women!

Amanda sandwich! lol

Onc mommies and babies

Proof in the debate that the Samsung Galaxy does not, in fact, take better pictures than the iPhone! lol

Photobombed by the babies!

Monday, August 5, 2013

Florida so far...

Hello from Sunny Florida! Or not... In the three days since we have been here it has rained at least ten times. And not just slight sprinkles like we get back home. We're talking torrential rain storms, complete with palm trees bending in the wind. Luckily, they don't last long, but rains such as these I've never seen in my lifetime!

Something else I have never seen in my lifetime? So many people with manners in one spot. The people here are so nice, so sweet and courteous, I am in my element. Even a child who looked up at me from his crouch on the floor as he tied his shoe looked up at me and said, "Oh, hello, ma'am. " I was so surprised by his impeccable manners that I immediately forgave him for making me feel 100 by calling me" ma'am" (Surely, we're not old enough for that yet, are we?) and I was close to giving him a dollar. It's one thing I truly miss, children and people in general with manners. No wonder everyone thought Sarah was so well - mannered, while I was embarrassed more often than not by the impertinent things she said. We were working on it, and she was getting better as she grew older, but I would like to think that my daughter would have been of the "yes, ma'am" variety if I had gotten to finish what I started with her.

The trip has had its little bumps to be sure, a cold I caught on the plane (again, attributing to the lack of manners from us west coasters) and other such minor disasters, but overall, I am determined to make the most of things. This is, after all, a trip we are taking in honor of Sarah. Disney World was on her bucket list, and so my mother and I have made a pilgrimage of sorts, carrying one of Sarah's beloved Lalaloopsy dolls in memory of her.

Sarah carried at least one Lalaloopsy doll everywhere she went, and no more than four, since even fun, liberal mothers such as I have their limits. After much deliberation, we decided to bring Pepper Pots N Pans. Don't ask me why, this was the one that made the final cut. Sarah was an equal opportunity employer, she rotated her toys fairly and equally, and Pepper has not been anywhere in quite some time. So, while she was not among the favorites, she was chosen nonetheless, and so I have been making myself subject to some very strange looks as I carry around this doll at  age  34.

See, someone sees a grown woman carrying a doll, they expect to see a child in tow. When they don't, they assume either the family has become separated and the child is elsewhere, or that I'm insane. Judging by the looks I've been getting, the latter seems to be the first thing that springs to mind. Which leaves me in the difficult position of having to explain my purposes for being a grown woman carrying a child's plaything. I say simply that it is my daughter's doll, hoping that it will be enough, but it never is. Telling them this naturally begs the question, where is my daughter? This is where things get sticky. People's curiosity gets the best of them, and I am forced to hurt them with the truth. Through tears that hover just beneath the surface, I am forced to say out loud that my daughter passed this April, and then I get that look. That heartbreaking look of sympathy and regret, and suddenly, I feel worse than they do.

This happened not once but thrice at the Titanic exhibit. I nearly left the doll in the car. But my mother insisted she wanted it for the pictures and begged me to retrieve it. Which I did. And then the different character actors thought they were going to be clever at my expense and then instantly regretted it. Which broke me down. Perhaps it was the kindness in their eyes, not just feigned sympathy but true regret. Perhaps I was just tired. I have to say it out loud at least once a day, my daughter is dead. I can say it with a sympathetic smile now, sorry to make the asker uncomfortable. I don't know why all of a sudden it was enough to break me down. But there it is.

Today was a Lala hunt, which is always exciting, especially when you find what you're looking for, and then a tour of a chocolate factory, which would have been a lot more fun if we had had Sarah and not been stuck behind the Annoyingtons. I swear, I don't know why it is that everywhere you go there is at least one annoying family with about a million kids they can't control, a harried mother and a father who couldn't give less of a shit, but they usually end up somewhere in my vicinity.

A seafood dinner and impromptu shopping trip soon set things to rights. Tomorrow is Disney World. I'm excited, because Disneyland is one of my favorite places on the planet, she my daughter inherited that. I am ambivalent about tomorrow, hoping that I don't break down for no reason over seemingly nothing, when really I just miss my daughter so, so much. Already, Sarah would have had a blast with everything we've done, airplane turbulence included. If there is anything my daughter taught me, it's that every cloud has a silver lining. (Yes, pun intended. I went there, deal with it!) I am determined to enjoy this trip every bit as much as she would have, and I know wherever she is, she is smiling.