Thursday, March 20, 2014

Julian's Sunset

Okay, so I know it's been a hot minute or two since I posted last, and I may have to do several posts at once because there have been so many things happening, but I had such a blessed week that I have to share it with all four of you who read this! :)

March 18, 2014 was Julian's last official day of chemo. His mom posted it on Facebook, and I knew that some celebration was in order. They celebrate at the hospital, of course. The child life department is amazing at CHOC, he got a hand made sign and a trophy and a large prize, which made him very excited! But Julian meant so much to my Sarah, I knew she wouldn't want me to let this momentous occasion pass without a celebration. After four long years of chemo and radiation, Julian is done with treatment. He's still here. He's alive. He's in school, and he's doing well. He can play soccer and live his life like a "normal" little boy now, as much as he can. He and his mother stared the Cancer Monster in the face and made it through to the other side, on their own. That is an accomplishment.

So I drove to the hospital with cupcakes, and promised Julian that I would take him and his mommy to Ferrell's for ice cream after his last chemo and eight hour hydration. He was so excited. I chatted with the nurses for awhile, Julian finished his chemo, and we went to Ferrell's for dinner, accompanied by Julian's uncle and some family friends. We, of course, advertised greatly what we were there to celebrate, and the waitress went out of her way to make the day special for Julian. He got to bang the drum. We discovered that the child has rhythm, and mom balked when it was suggested that we may need to get him a drum set. The waitress have Julian her hat, and just about bowled over when I overtipped her, and Smiley (the family friend) handed her $40 cash. I could feel Sarah's presence, and my heart was only tinged with sadness at the thought that Sarah would have loved to be there to celebrate her "boyfriend's" last chemo. She never got to celebrate hers.

As blessed as the day was, the next is what I'm actually trying to write about. Amanda, Julian's mom, suggested the day before that we go to Disneyland to continue the celebration. She's newly pregnant, and can't get on Julian's favorites, and we all have passes, so that was the plan. We texted the next morning, and that was still the plan. Then a few hours later, Amanda calls me and asks if I want to go to the beach instead.

Now, anyone who knows me knows that I am always up for a trip to the beach. I can scarcely manage one of two trips a year, but I love it there. There is something about the ocean that restores my soul and makes me whole again, or as close as I can get. So after two seconds' worth of deliberation, we settled on the beach. Julian hadn't been to the beach in 3 years (since before his relapse) and wanted to watch the sunset. Done deal. I dug my bathing suit out of the closet, where I had buried it in anticipation of the winter we never got this year, packed my beach bag, which was surprisingly more accessible than my bathing suit, stopped at target for snacks, and headed out to pick up Julian and Amanda. We got to the beach at around 3:30. We walked across the sand, and stopped midway, but Amanda thought we should be closer to the water since Julian wanted to build a castle. I could feel a strange push to move myself, so we trekked closer to the water and began to set up. All of a sudden, Amanda looks up and says, "Is that Monica?"

Monica is one of the "favorites" on Sarah's list, and Monica it was. When I looked up, there were others with Monica, but at a distance, I naturally assumed that the other slim, dark-haired girl with Monica was Casey, another favorite nurse, and Monica's roommate. We regarded each other from a distance from behind our sunglasses for a moment, and then started towards each other in a hurry. As lovely as it would have been to see Casey yesterday, it was not Casey. It was Kara. Kara had absolute top ranking in the favorites category. She was literally in the bed with my daughter as she lay dying. We hadn't seen each other in ages, nearly a year now, but I am thoroughly convinced that this little girl had everything to do with our change of plans that day. What are the chances that we would end up at the same beach, just arriving as they are leaving, when we weren't supposed to be there in the first place, but at Disneyland instead?

We played with Julian in the water, built his castle, wrote his name in the sand. I wrote Sarah's name in the sand and Julian came and asked what I was doing. When I told him, he said, "Okay, I'm going to write my name next to hers, then."

We flew his Minion kite, "high high high, so Sarah can see... Okay, that's enough... It's going to get lost..." and then I thought we should go up and have a snack. Julian didn't want to go back up, he was having a blast with the water. It was cool but not freezing and the day was just gorgeous. Not two minutes later, a flock of seagulls (or "eagles" as Julian calls them) had uncovered, opened and devoured a brand new bag of Cheetos that I had bought for Julian. There were 3 other bags of chips, but they ate his. I do not put it past my daughter to have sent that flock of "sea chickens" as she used to call them to eat his Cheetos just to get him out of the water, and to get him to eat the healthier snacks that we had brought all in the same measure!

Before long, the sun was setting, and we took lots of pictures. Julian was quiet, pensive, and I have no doubt that Sarah was on his mind, as she was on ours. The minute the sun sank below the water, Julian wanted to go. It was a beautiful day, blessed with beauty and peace and good friends. Amanda said it all felt like a dream, like this isn't really happening. Could her little boy really be here, at the beach, beautiful and healthy and strong and a survivor? Could this nightmare really be over, at least for now, for this one blissful moment in time? It does seem incredible. But as far as dreams go, this one was pretty amazing, and one I will cherish for years to come.

Thursday, October 17, 2013

October 17,2013 Six Months

Excerpt from Sarah's journal

Today marks six months since you died, baby girl. Six months since I've held you, kissed your cheeks, your tiny little palms, the soles of your little feet. Six months since I've heard you laugh, or cry, or sing. Six months since I've granted one of your crazy requests, or made a strange meal or done anything for you. Doesn't seem like anytime at all, and yet it has been a lifetime. It all seems like a dream, a beautiful dream that belongs to someone else, our time together. I have to remind myself sometimes that you were here. You did exist.

If I am any better than I was, it is solely your doing. What have I been doing in all this time without you? Nothing of significance. I have cried, every day. Sometimes only for a few moments, if I can help it; but sometimes, I just can't. I know you're in a better place, you're where we all want to be, blah blah blah. But there is that selfish part, that human part, that hole in me that still aches for you. Here or there, I just want to be with you, and I can't right now, and that hurts.

I think I'm doing okay. I think I'm getting better. It's hard to tell sometimes, and I'm hardly the best judge for it. But everyone says I'm holding up "remarkably well," because I'm not visibly falling apart;because I haven't killed myself, or become a raging alcoholic, or a drug addict, or found some other way to destroy myself. But none of that would be honoring you.

Through your eyes I learned to see myself, see the world, from a different perspective. You loved me so much, as much as I love you, which says a lot, and better than I deserved most days. I tried, baby girl. I tried so hard to be the mother that you needed and that you deserved, the best mother I knew how to be at the time. I am sorry for all of the ways that I failed you, for all of the ways that I fell short. Still, you knew that you were loved; you felt it, you exuded it, you demonstrated it with others, so I know I taught you well.

You left because you were done here. In five short years, you learned everything that the rest of us are still trying to learn. There were many earthly experiences you never got to have, but perhaps that's because you didn't need them. Experience is how we learn, how our spirit grows, and you already knew, your soul was already enlightened. You stayed longer than you needed to for my sake, I know that now. I needed you, and so you stayed. I must be worth more than I think if you would delay Heaven just to stay with me.

Six months since that day, little girl, when you left us for good. And yet, you're still here. I can feel you, even almost hear you sometimes.

You were so smart. My little genius! You'd be in school now, if you had stayed. Probably fully reading by now. You were just starting to when you died.

I am so lonely without you, little girl! My entire world has disappeared, and now it's just me. For the first time ever, I have to live my life for only me. I don't like it. I've spent so many years living for everyone else, and when you came, you were my heart's desire fulfilled. All I ever wanted out of life was you. For five years I had you, and it was the best five years of my life, in spite of everything, because I had you. You were the most amazing child anyone could have ever asked for, and I am so grateful that you picked me to be your mother. You could have chosen anyone. Someone better equipped, someone who had a better idea of what they were doing. But you picked me, and for five years, you made me so unconscionably happy. Now, I have to forge a new path, on my own.

I am not angry at you for leaving. I know you stayed as long as you could, you even stayed longer because I wasn't ready to let you go. I am sad. Devastated, despondent, desolate, those words are more accurate. I miss you so much! The people who were supposed to stand by me are nowhere to be found, but I am not without support. I don't know what I would do without my family and friends. I'm sure you had something to do with bringing them back into my life, so that I wouldn't be alone. We took care of each other, always, you and I. Wherever you are, I know you're still taking care of me.

As a mother, my heart aches that you no longer need me to take care of you. But I can love you. That, I can do. I can still love you, as much as I ever did and more, and hope that it crosses whatever distance there is to find you well, happy and safe.

I love you more than dummy bears, baby girl.

Forever,

Momma

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.

Tuesday, June 25, 2013

Hiking, A Healthier Me, and Vegas, Baby!

Okay, so I know a lot of you have been wondering what I've been up to, since I obviously haven't been writing, and I'm still not ready to go back to work. To be perfectly honest (for a change, ha ha), the last post really took a lot out of me. With the exception of a few notes here and there for things I would like to write about, I really haven't written anything since. The post about Sarah's death was emotionally exhausting to write, and I have heard from many of you that it was equally as emotional for you to read. It literally took everything in me to be able to write down with any sort of accuracy the beauty and the excruciating pain of those final moments with my daughter, and I'm not entirely sure I did them justice. I just didn't have anything left after that. I spent the better part of my days in bed. On occasion, when invited, I would venture out into the world with my friends and participate as best as I can. I am unaccustomed to being a single adult in the world. I was 21 when I met my soon-to-be ex, and I immediately jumped into a ready made family with three children. I haven't focused on only myself, well, ever. So I don't really know how to be a single adult. but I am working on it.

The mornings are the most difficult for me. Sarah would leave her bed at 7 am every morning and crawl into bed with me. It has only been two months since she died, so my body is still accustomed to this pattern. True to form, every morning, no matter what time I went to bed, I wake up at 7 am, expecting my daughter to climb into my bed, all elbows and knees, with Castles and 14 of his closest friends, to nestle in next to me and afford me an hour or two more of sleep, providing of course that the little monkey is ready to go back to sleep. So, every morning at 7 am, in that dream state somewhere between asleep and awake, I still wait for her. And she doesn't come. And then I remember why. Every morning I am awakened by sadness. I roll over, try to go back to sleep, and sometimes, I succeed. I mope until I get sick of myself, and then I find myself something to do, invent errands to run, create projects for myself, anything to keep myself distracted and busy.

Lately, my favorite activity, believe it or not, has been my daily hikes/walks. Those of you who have known me for a long time can close your mouths now. I know, no one ever would use the word "outdoorsy" to describe me, but it has been my salvation, I think. It started out with a simple invitation from a friend who was doing it with a group of other friends. I have made it a personal mission to say yes to every invitation, whether I feel like it or not, because a) it keeps me distracted, and I do manage to have fun once I'm there. and b) I don't want people to stop inviting me. I won't be despondent forever, at least, I hope not! Being a Gemini, I am versatile and always up for an adventure, I'll try anything once. Except things that will get you killed, like skydiving. So, when I was invited to go hiking, I figured, why not. It will get me out of the house, I will be amongst friends, and the endorphins can't hurt. Plus, if I lose a couple of pounds in the process, then bully for me.

I think I was the most surprised at how much I really benefit from these hikes. While I am not crazy about the bugs, the sunburn, or the trail dust that lingers on your skin in a layer of grit, these trails are often beautiful, idyllic even, peaceful. The quiet is soothing, tranquil. For a moment, my mind can be still, which is a luxury I am not afforded anywhere else. I actually find myself looking forward to these hikes every week. I have been thrust into this world that I didn't ask for and I didn't want, and I am completely unrecognizable to myself. I don't know who I am anymore, but this is a good place to find out. I never in a million years thought that I would enjoy it this much, but I really do. I'm a hiker...who knew?

Look at that...how could you not find peace in such an idyllic setting? It's amazing...

The endorphins don't suck, either. I feel so much better about life when I'm active. I started planning a 3 mile walk around my neighborhood, just me and my iPod, and I have to say, I've lost ten pounds so far, and I feel great! I feel just a little less like the world has left me behind. I have come to the conclusion that if life leaves you behind, it's because you chose to stay behind. I refuse to stay behind. If this never-ending nightmare is to be my new reality, I may as well kick off my shoes and make myself comfortable. The upside to having your slate wiped clean is that you can be anything you want. The ways I used to define myself no longer apply: Teacher, mother, Cancer mom, wife. Time to figure out who I am now, on my own, when I am no longer defined by other people. Maybe that's what I'm meant to learn. Maybe I'm just reaching for a reason to continue to exist, but it's as good a reason as any.

In the spirit of reinvention and self-discovery, my good friends decided to plan a Vegas trip for my birthday, since I have never been to Vegas in my adult life. Yes, really. My parents used to trade us off there in the summer for vacations and what not when we were little, since I spent my formative years in Utah (yes, really!), but gambling, drinking, fun Vegas? Never. It was SO MUCH FUN!!!!

 My favorite picture of us in Vegas...From the left, Alex R.(whom I call Lex for differentiation purposes), Adam, Alex G., Jaime (Lex's brother, not sure what he's doing there...), Adrienne (Alex G.'s wife), Nick, Kathie, and yours truly at the Venetian!

 Sunset Station in Henderson, Nevada, where Kathie, Nick and I stayed...gorgeous!

 The Tournament of Desserts at a buffet on Fremont Street. Again, not sure what Jaime was doing there...I think he's hiding from the law. Tournament of Desserts works like this: You get every dessert the buffet offers, and you take turns sampling some of each. The one that is gone by the time everyone has had a taste (or two) is the winner. The lemon poppy seed pound cake won this round, with the banana cream pie coming in second.

I got to hang out with my friends by the pool, gamble, dance, drink, of course. I also got a tattoo, my first and only, since I never thought in a million years I would ever get one, and someone literally had to die for me to get this one! It didn't hurt as much as I thought, but it did hurt plenty, akin to early labor pains; painful, but bearable. My friend. Nichole, whom I went to school with, owns a shop with her husband in Vegas, StedFast Tattoo Parlor, and she hooked me up. They did SUCH an amazing job! My shoulder stings a little, but I am so pleased with the results. The only tears I shed were emotional, thinking about the day Sarah was born (the labor pain thing), the day she died, and how many 3/4 inch port needles they had to poke my baby with cold turkey because she was allergic to the numbing cream they use on everyone else. Come to think of it, if I were smart, I would have put some LMX on my shoulder before I went! :) But every time the pain got to be too great, I thought of her, so tiny and so brave, taking on those needles without even flinching most days, and those needles are no joke.
See that THICK ASS pointy thing on the end of the white thing on the top? That's the needle. Yes, it's that thick, sometimes longer than what's shown here. And she took it like a champ, so every time the needle pierced my skin, and I had the urge to cry, or curse, I thought of my baby. Now my skin is tender, and stings a little, like having a scrape or a sunburn, but I have a really awesome tattoo in memory of my daughter.


My awesome tattoo artist, Chris Gasca, working on my tattoo!
My righteously awesome tattoo, which I designed myself, thankyouverymuch, with the help of my very patient friends at StedFast Tattoo Parlor in Vegas! 

 For those of you who are new, and have been living under a rock for the past five years, the heart is a patchwork heart that is one of the symbols used by Lalaloopsy. Each doll has a heart on their bottom, with a a date inside that corresponds to the day of the year that the last stitch was sewn, basically made-up national holidays that correspond to the theme of the doll. For example, Ember Flicker Flame, the firefighter, was sewn on May 4, International Firefighters Day. So when I was debating what to put inside the heart, I thought of putting the date of her death, which is sort of a rebirth for her into this new life beyond the physical world. It turned out so perfectly, and I know I will love it even more once the discomfort of the healing process is over.

So ended my wonderful adventure in Vegas. I had a blast! I want to go back, like, now.

So, then comes the question of work, which is the question I get most often. Before Sarah got sick, I was a credentialed teacher who was forced to continue subbing because of the hiring freezes in most districts. My favorite school kept me plenty busy, though, and with two or three maternity leaves a year, it was okay. I loved my job. Then Sarah got sick, and it wasn't even a question in my mind. Of course, I would quit and take care of her. With the exception of a few insensitive people (most of them related to me), most people understood this decision. but now that Sarah is gone, people are wondering when I'm rejoining the work force. So here's the thing: I loved my job, I really did, and sometimes, I do miss it. Still, after everything I've been through, I just don't know if I could go back to it. I'm a different person now. I have a whole new perspective on life because I have seen some real shit happen. I have held my child as she drew her last breath. I don't know if I could go back to kids complaining about homework and how boring school is when all my child wanted in life was to be able to go to school and do what normal kids get to do. Spoiled, entitled children and their spoiled, entitled parents complaining about shit that doesn't matter, or that's their own fault to begin with, I just can't deal with it anymore. Not to mention all the bureaucratic bullshit that goes along with teaching, I just can't. I don't have the head for it anymore. Plus, during the course of Sarah's treatment, my credential expired (you have to clear it through the district that hires you, and since I couldn't find a full time position before she got sick, and I stopped trying while she was in treatment, my time ran out) and they took me off the sub list because I wasn't working. So, I could fight to get my job back, see what I could do about my credential and such, but I would be fighting for a job I'm not even sure I want anymore. More and more as I consider the possibilities, I find myself gravitating more towards child life.

Child Life is an entire field that is dedicated to keeping kids happy and entertained while they are in the hospital, as well as helping patients and their families cope with what is happening to them. The Child Life Department was INVALUABLE with a child as willful and playful as Sarah, who got easily bored, but was entertained by the slightest thing. As an elementary school teacher, I saw a lot of kids come and go, but these kids who have to fight for their lives, they are special. I know, all kids are special, but these kids are extraordinary. They are always happy, always smiling, and their parents go through so much, I really feel this is where I need to be. I know how to help these kids, because I helped Sarah through it. I know how to help the families, because I've been there myself. My unique perspective could help a lot, I think. So, I am looking into that, sooner rather than later. Being that I already have a background in education, I think it would only be a few extra classes and a test to become certified, and one of the child life specialists at the hospital suggested that I start off volunteering at the hospital so that I get a feel for it, and that's something I can get started on right away.

I know, starting a career from scratch is scary, and challenging, and not exactly bringing in anything right now and might not for awhile. But my wonderful, supportive mother has reassured me that she isn't worried about it, as long as I keep writing and I have a plan, with an emphasis on the writing. She really thinks this blog could be something. All I know is, it has kept me sane throughout this process. Cancer is a lonely business. No matter how much support you have, ultimately, only you are in your head. Only you know exactly what you feel, and not everyone understands. The very subject makes people uncomfortable and they avoid it like the plague, which is isolating in and of itself. I am in the unique position of having a life that reads like a bad country song right now. I've literally lost everything. Perhaps people are afraid of upsetting me, or perhaps they feel it's contagious, or perhaps they just don't know what to say. But I feel guiltier pretending like she never existed. I have no guilt or even sadness when I talk about her. I always talked about her before, and now that she's gone, no one does. It's not presence that hurts, it's absence. The silence in the house, the silence of my loved ones, the silence of a life at a complete standstill after such chaos. It's time to shake things up a bit, make some noise of my own. I refuse to get left behind.





Friday, May 10, 2013

Goodbye, Baby Girl...

If you are reading this, chances are you already know what this post is about. It's like a bad movie. You know what's going to happen. You know what comes next, but you can't help but hope that you're wrong. Then there it is, reality exactly as you knew it would be, but hoped it wouldn't. After four long years of fighting, Sarah Elizabeth Gomez lost her battle with leukemia.

On Friday, April 12, 2013, Sarah had an appointment in OPI for labs, blood and platelets, which were very badly needed. She had spent the last two days on the couch, tired and cranky and miserable, barely eating, and in excruciating pain every time she had to pee. I found myself having to sit on the floor in front of her potty, holding her hands, and teaching her to breathe like she was in labor. Every time. So by Friday, I was eager for her to receive her blood products, if only so that she would feel a little better and have a little more energy. Labs were taken, blood was started, and then the doctor came in. Dr. Horvath, the wonderful doctor who gave us three good months with Sarah, was at a conference, so Dr. Torno, the most compassionate of the doctors, came in. She did the usual once-over, palpated her abdomen, then looked at me with tear-filled eyes and gave me a hug. In my mind, it was a compassionate hug for the slow decline Sarah has experienced over the last four years, for how hard she had to fight. I was not truly prepared for what she said next. Four words that changed my life forever. "Oh, hon....we're close."

Thankfully, Sarah was asleep from the premeds since blood had already been started, and she didn't see the torrent of tears that found their way down my face. Dr. Torno explained some things I can't quite remember now, and then I managed to calm myself enough to ask her how long Sarah had. She shrugged and said a week, maybe two at the most. A week!!! She asked what I wanted to do, I told her that I wanted to take Sarah home. Sarah hated being inpatient, and we had already discussed this months ago, what we would do if and when the time came. My intention was to take my beautiful daughter home to die in her bed surrounded by her beloved dolls. When Dr. Torno left the room to make some calls, I burst into tears in earnest. I texted my friend and fellow cancer mom, Andrea, because I knew that her son had an appointment in the area that day. I knew better than to call my mom at work, and I wasn't quite ready to deal with Sarah's father. I needed time to wrap my head around this, and I needed someone to be there for me. I will forever be grateful for Andrea. Our case worker and the social worker came to talk to me about hospice, and I asked that we do it in another room. We went, and after I was comforted, we discussed some details. Andrea came in shortly thereafter, and once all was decided upon, the official people left and Andrea and I stayed in what was meant to be the isolation waiting room and was in fact a sort of makeshift staff lounge. We sat there for a long time, she held me as I cried. Hard. We talked it through, and then her husband brought me lunch. I went back to my room, and by that time, Dr. Horvath called me from her conference and said that she would like Sarah to be admitted so that we could get her pain under control before we put her in hospice. I agreed, because I trust all of the doctors implicitly, but especially Dr. Horvath. I called my mother, and managed a call to Sarah's father, who told me to call him when we got home. Yeah. Sarah woke up, pitched a fit because she hates being inpatient, but I held her and explained that the doctors were going to make her stop hurting and then send us home. Luckily, I still had several "go bags" with clothes, toys and supplies in my car, which I had packed a few days prior when I thought they might admit her, but decided not to unpack, just in case. I went to the car, loaded up the stroller, and by the time I got back, the room was ready.

They sent us upstairs to the Rainbow Room. The Rainbow Room, one of two in the new tower, is basically a death suite. It is the last stop for these little warriors, the most comfortable rooms in the whole hospital where patients come to die. Beautiful, yes. Comfortable, to be sure, but still the last place my daughter ever saw. Sarah made her peace with being in the hospital, they gave her the infusion of platelets, and I put away her things while she played on the bed. The blood had perked her up and she was in good spirits. I plastered on a smile for her sake, and truly tried to soak up every moment. A loudspeaker announced that Turtle Talk would be starting soon, so I got her ready and took her downstairs. Turtle Talk is where Crush the Turtle from Finding Nemo comes out on this huge screen on the second floor lobby and actually interacts with the kids. It's pretty awesome, and Sarah loved it when he chose her! Dr. Torno happened to pass by, and was happy to see her looking a lot better than she had that morning. Can you blame me for having just the tiniest bit of hope that maybe they were wrong? Or that a miracle might fall out of the sky and that my baby might be on every news channel in the world as a little girl who defied the odds?

When the room was still at the end of the day, and it was just the two of us, I asked her as I was tucking her into bed if she understood what was happening. I didn't elaborate. I wanted to see how much she knew. She said that she understood, but that she was scared. I tried my best to reassure her, that everything would be fine, that we had discussed Heaven before, and that she would be content and happy when she got there. She expressed concern that we wouldn't be together, that I would be all alone, that she would be all alone. I dispelled all of these fears as best as I knew how. The one that broke my heart was when she said to me, "Momma, when I'm in Heaven, I won't have your love anymore." I started to cry, of course, and I told her that no matter what, she would ALWAYS have my love. I reminded her that our hearts were connected, even when we weren't physically together, something I had told her before to alleviate the separation anxiety that began after her father left. She was constantly afraid that I was going to leave her, too. I reassured her that we would always be together, that she could see me whenever she wanted, that I would always love her, even in Heaven. She wiped my tears and told me not to cry, that it was going to make her cry. She got quiet for awhile, then said, "Momma, I don't mind being in the hospital so much. They take good care of me here." In retrospect, I think some part of her knew she would never leave that room, and she wanted to reassure me that she was okay with it, so I wouldn't feel badly that we couldn't honor her wishes and take her home.

Over the weekend, Sarah's pain got worse and worse. They kept changing her pain meds, upping the dosage, nothing seemed to work. The doctors didn't feel comfortable sending her home, and I didn't argue. What kind of time would she have at home if she was just in pain? But true to form, Miss Bossy Boots had her bucket list all ready. She wanted to go. She had shit to do! Disneyland, of course. The Aquarium, because she wanted to see a shark up close, and see the penguins. She really wanted Sea World, but I didn't think she could make the trip. She wanted to go to the zoo to see the flamingos. She wanted to go fishing, and she wanted to go to the beach. Top Five. And she didn't get to do any of it.

She did, however, get to go on a shopping spree in the hospital gift shop. Kathie and Nick, my sister, my best friend from childhood and her daughter all accompanied us. Sarah had an amazing time looking at all of the possibilities, because there was no way I was saying no that day, and she knew it. She ultimately ended up with a pair of lady bug wings, two hello kitty cups, a five sided crayon, and various other small items that escape my memory. There was some issue because I tried to pay with a $50, and apparently, they couldn't make $20 worth of change, and I was a terrible person for even attempting to pay with anything larger than ones. We made fun of the clerk on the way out, and Sarah was happy. My dad says, typical woman, it figures she would squeeze in one last shopping trip. I am glad she at least got to do that.

After two days in the hospital, I yelled at her father over the phone and told him to get his sorry ass down there, and that it was inexcusable that he hadn't come when I called him before. He said he didn't  know it was like that, that I always say she's dying. I completely lost my shit in the hallway, yelling at him, that yes he did effing know, that I always let him know what's going on, and a bunch of other things I'm sure weren't so nice. It was heated enough that the charge nurse came charging down the hall, and I immediately started making apologetic gestures so that they didn't eject me from the hospital. I was swiftly ushered into a conference room where I could yell at him in peace. He came, and I had to beat it into his head that she was dying. He had been living in denial all this time. He couldn't accept it, by his own admission, wouldn't accept it. I stood there, watched my husband cry, wavering between sympathy and apathy. I loved this man once. He is still my husband. I should have been able to comfort him, to hold him, we should have been able to go through this together. But we couldn't, because he has a girlfriend. So I stood by and watched him cry, watched him come to the realization that I had spent four years coming to. She was really leaving us, and there was nothing we could do. 

Monday, she literally slept all day, as in, 24 hours straight. She got up twice to pee, both of which were excruciating experiences, but then went straight back to sleep. By the next day, her pain was out of control, she was irritable and inconsolable, and the only thing that made her feel any better was when I would rub her feet with essential oils. Andrea had told me that peppermint oil really helped her son with his headaches, so I bought lavendar and peppermint, and mixed it with organic olive oil, which I stored in a specimen cup that had previously contained some of Sarah's supplements. Recycling is cool, y'all, but I was seriously freaking people out with that oil in the specimen cup! Because of the color, and the fact that it was in a specimen cup, people seriously thought it was pee, including the trained professionals, and I got a lot of weird looks! But it made her feel better, so I rubbed her feet, sometimes all day. It was only by the grace of God that my hands never got tired, no matter how long I rubbed. The oil relaxed her and made the room smell like gum at the bottom of grandma's purse, sort of warm and comforting.

Tuesday she went fast. She had visitors, a lot of visitors, and I think it was a bit overwhelming for her, because she was irritable all day. It was a bit overwhelming for me, to where when my friend Giselle suggested going downstairs for coffee, I jumped readily at the chance. When we got back, The doctors decided to sedate her, and I asked them to clear the room, to make it easier for both of us. Nurse Kara did it gladly. How blessed were we that Sarah got her two favorite nurses on the day she died, and that it wasn't by accident? Kara called everyone but the mayor to be sure she got Sarah that day. By the time I got back from coffee, Sarah was irritable and being mean to her cousins, whom she had never met before. They were climbing on her bed, and she said that she didn't want them to do that because she didn't like people she didn't know, and that they were going to get her bed all dirty. I took one look at my baby, and I instantly knew what was wrong, as mothers do. I looked into her eyes, and I said, 'There are too many people in here, huh?" Sarah's eyes filled with tears, she pouted and nodded her head, so grateful that I understood without her having to express it through her pain and suffering. I am so grateful that I was able to understand her in those final moments in order to make her more comfortable. Immediately, Nurse Kara called me out of the room, and Dr. Kirov was in the hallway, telling me that Sarah was progressing toward death faster than they had anticipated, so they wanted to sedate her at that moment to try to minimize her pain. This news disheartened me greatly. Trevor's mother had been begging them for days to sedate him, and they wouldn't because he wasn't far enough along yet to justify it. And he had been there a full week before Sarah. He had far more complications, his pain seemed greater. Yet, we had been there for three days, and they were telling me it was time. Dr. Kirov grabbed my arm, squeezed it in comfort, but would not meet my gaze. I have mentioned before that Dr. Kirov's body language is very telling. I knew in that moment that I was going to lose my daughter forever. This was it. There was no more hope, no more waiting for 11th hour miracles, this was it. It was only a matter of time before I said goodbye to my daughter for the last time.

I called her father out into the hallway, explained to him what was happening. Kara and I had already discussed clearing the room to make it more comfortable for Sarah, and she said that she would play the heavy. Sarah's father was still in denial, still asking if there wasn't anything else they could do. In my frustration I remember thinking that this child would be dead a week and he would still be asking if there wasn't anything else they could do for her. I understand he was grieving just as I was, probably worse, because he was playing catch-up, no longer able to deny the reality, but seriously, where the fuck has he been all this time??? I tried to be patient, then gave up and went to be with my daughter. Kara cleared the room, administered the first round of Versed. I climbed into bed with Sarah and held her like an infant. Nurse Kerry, Sarah's favorite night nurse, took over the night shift, and I was so grateful to see her face. I could not have gotten through it if it had been anyone other than her favorite. Over the years, we have become friends, family even. It felt right that they were there to say goodbye. I asked Nurse Kerry to send people in one at a time, so it wouldn't be too overwhelming for either of us. My grandmother started to protest, asking if I was serious. I assured her that I was, and asked her to please not start with me right then. She stopped, and left the room. Slowly, people filtered in one by one, until the room was filled with people again, but only the people who Sarah loved the most. Andrea and her husband, Eric. My mother, father and stepmother. My sister (my other sister and brothers were down the hall), and my brother, Ramon and sister-in-law, Diana; Kathie and Nick, who are as close to spiritual godparents as it gets, I think. Kathie's mother, Stella, my cousins, Michael and Jenee. Their mother, my aunt Rose, and her other daughter, Paula. My best friend from childhood, Esther. From what I hear, there were more people in the conference room down the hall, but those are the people I remember in the room. When Stella came in, I was holding Sarah in the bed, and she said, "I feel like there should be lullabies." We all agreed, and my cousin, Michael put the Disney channel on Pandora on his iPad. The room filled with Sarah's favorite music, and it lightened the atmosphere tremendously. We started to tell "Sarah stories", reminiscing about all of the silly things she would say or do, how clever she was, how wise and how brave.

 Instantly the room filled with love and laughter. It is impossible to think of Sarah without being happy, without laughing. That's the way she loved things to be, always happy and full of love. During our conversations, Sarah would moan periodically, trying to contribute to the conversation, I think, and being physically unable to respond. She wasn't able to swallow, she was so heavily sedated, but her mind was still very present. I would try to put the suction tube in her mouth, and she would bite down so that I couldn't get it in her mouth. Then once I  had it in, she would bite down so that I couldn't get it out! A little stinker to the end!

Her father made some excuse about having to take Mariah, his daughter, home so that she could go to school the next day. In my head, I called bullshit, but didn't argue. Her sister was dying, like she was really going to go to school the next day! But I had more pressing problems at the moment, and I didn't have time to argue. It was his conscience, his guilt to deal with if she died and he wasn't there. I knew where I was, and I was only in charge of myself. This is what I kept telling people when they would grouse to me about his behavior.

Sarah released her bladder after awhile, and it got all over her, me and the bed, so I had no choice but to release her, clean her up, clean the bed, change my own clothes. Once everything was done, I noticed that she was still in pain, so I laid her down on the bed and got out the oil. I sat at the foot of the bed and began to rub her feet. Through her sedation, she moaned, in protest when I put her down, but when I began to rub her feet, she relaxed instantly.and the environment got very mellow, very serene. The lights were dim, and everyone was so calm. The love and tranquility was palpable in the room. "Hallelujah" by Rufus Wainright came up on Pandora, and I started to hum, because it calms Sarah when I sing to her. In my mind, I replayed the night she was born, when I spent the entire night singing softly to her while her father slept. It was an absent-minded thing on my part, yet not. I would have done anything I could to ease her pain in that moment. Then Nick started humming with me, and on the "Hallelujah" parts, everyone started singing in earnest. I think the only reason there was humming was because no one knew the words! :) It was soft and loving, a mother's lullaby sung by everyone who loves her. I wish that I was articulate enough to paint you a picture as beautiful as the one I can recall in my mind. In that moment, I think we all caught a glimpse of heaven.

 The cross-talk started up again, and Sarah through her sedation said my name three times. "Mom...Mom....Mom..." I mentioned before that Sarah was so heavily sedated that she couldn't even swallow, much less form words. The first one I didn't hear because I was talking to Kathie, and Kathie was the one who stopped our conversation and said, "Wait, did she just say 'Mom'?" We all stopped to listen, and then she said it twice more. I reassured her that I was there, that I loved her and that she was safe, that she shouldn't be afraid, that everything was okay. Someone mentioned that they hoped Sarah wasn't waiting on her father, because he more than likely wasn't going to return. Later on, I found texts in my phone from him that his "aunt" (I am not entirely convinced it was his aunt, as his aunt was his excuse during the two years he was carrying on with that woman) was having a hard time with Sarah's imminent death, and that he was trying to console her. It upset me, because Sarah's father was very important to her, and she needed him. His "aunt" is an adult, and her feelings could have waited. Not to mention that fact that if it were me, I would have sent him back to the hospital immediately, after giving him what-for for even leaving in the first place. But I digress. Someone (I honest to God cannot remember who, I think it was my aunt, but I can't be sure) said they hoped she wasn't waiting on him, and then her breathing started to get extremely labored. Her entire body convulsed with every breath, I have never seen anything like it, not even on television. It is awful to have to see your baby like that. I called Nurse Kerry in to up her pain meds, figuring she was in pain, and Kerry listened to her chest and confirmed that these were her final breaths. I put my hand on her chest, murmured to my baby through my tears that it was okay, that I was there, that she shouldn't be afraid, that I loved her. Underneath my hand, her heart stopped beating and her chest went still. At 12:54 am, on April 17, 2013, Sarah Elizabeth Gomez left this earth and everyone who loved her.

My eyes widened in horror and disbelief, how could this be happening? I shook my head, and broke down. My sobs turned into a full blown panic attack. I haven't had a panic attack in years, but I had one in earnest then. I had been holding in my sorrow for days, every time I would cry, it would upset Sarah, so I tried my best to keep it from her. All of the emotions I had been holding in all that time tried to come out all at once, and it was too much. Nurse Kerry crouched down underneath me, raised my arms above my head and told me to breathe. I calmed down eventually into quiet sobs, and Kathie, Nick, and everyone reassured me that I was the best mother to her, that I had done everything I could, that she knew how much I loved her and that I had done everything to make her happy and comfortable. Kathie said that I held the perfect balance between letting her be who she was and maintaining discipline, which was not easy with a child as willful as Sarah was, and Nick said that he was honored that Sarah liked him at all because she was so selective. She either liked you or she didn't, and sometimes, she made you work for it, but once you were in,  you were in. This lightened the mood some, and one by one, everyone filtered out of the room. Nick called Sarah's father, and he returned some time later, saying, "No...no..." over and over, like he couldn't believe it. What did he think was going to happen? He started hitting and kicking the walls, lightly, thank God, because I was not about to pay for that shit, and everyone watched in silence. No one moved to comfort him. Finally, my cousin Michael, compassionate, big-hearted creature that he is, went to attempt it, and that only made it worse, which is why I didn't attempt it myself. I know this man. They both disappeared into the bathroom, which I assumed was to contain him, but I was told later that he actually started throwing up in there. A few minutes later, he left the room, practically running, and I assumed that he was just going out into the hall, or maybe outside for some air or even a cigarette, but he left the hospital and never returned.

I was left alone with her for awhile, and Nurse Kerry offered to let me bathe her. If you had asked me a year before, or even a week before if I would be willing or able to do this, my answer would have been a big fat HELL no! But I have done a great many things in the past month that I never thought I would be able to do, and in that moment, I knew I would regret it for the rest of my life if I didn't. I bathed her the way I always have, the way I did the very first time when she was only a few days old, so soft and sweet and new. I said goodbye to every last inch of my daughters body, to her little hands, so much like mine, to Katie and Cafeteria, her feet. Katie was the right, a girl, and the trouble maker. Sarah had neuropathy from the chemo, and it manifested the most on the right side, so when her leg would go numb, she would trip a lot, so Katie got a bad rap. Cafeteria was a boy, Katie's brother, and he was more docile, but made "faces" at Momma. Cafeteria's "faces" were made by Sarah stretching her toes out as far as they would go. She made up these personalities for her feet, this whole back story, when she was two. Sarah's feet were my favorite part of her, her little monkey toes! All of these emotions, all of these memories came swelling to the surface at once, five years of a life, and it was all over in an instant. Kerry helped me with the bath, and by then, she had started to stiffen up. I realize that this may be hard for some of you to read, and I am sorry if it offends anyone, but this is the reality. This is what happened, and I wouldn't be doing my daughter justice if I didn't tell her story properly. As hard as it is for you to read, it's the truth and it was 100 times harder for me to live.

Sometime right after she died, my family had packed up all of our things and loaded them in the car, so I didn't have any fresh pajamas for her, so I just put the same ones on. Everyone who knew us knows that my daughter was always clean, NEVER had dirty clothes on, and always looked a fashion plate. She was better dressed than I was most days. But what did it matter now? She was gone. They were only going to remove them, anyway. Kerry helped me to roll her over so that I could get the pajamas over her back, and when she rolled her back, some blood had started to leak from her nose. My eyes filled with fresh tears. It was the hardest thing to have to see my baby this way, to see the hard physical evidence that she was truly gone. Kerry apologized profusely, and I reassured her that it wasn't her fault, that it's a natural process and that there's a reason why they only allow you to stay five hours post mortem. She apologized more, anyway, asked if I needed more time. I shook my head, explained that she wasn't in there anymore.

Kerry had me sign a release form so that once we found a mortuary, it would be easy on their end to release Sarah. She got the charge nurse, Karen, who is normally tough as nails, but was shedding tears profusely, more than I was at that moment, to come and sit with her, assuring me that she would never be left alone. Karen gave me a hug, entered the room to sit next to Sarah's bedside. I looked longingly back toward my baby, and I lingered in the doorway, physically unable to move. I tried several times to propel myself forward, and I just couldn't. I have never left Sarah behind in the hospital. Most nurses can tell you that unless you kick me out, I don't ever leave the room unless Sarah is with me. It was the hardest thing I have ever done to walk out of that room of my own volition and leave my baby behind for the last time. Andrea had stayed behind to be with me, to drive me home, and she held me all the way downstairs as Kerry escorted us down. It seemed unconscionably long as the valet went to retrieve my car while we waited in the new CHOC ER, which was surprisingly empty. I sat in a chair, visibly in shock, clutching the blanket that had  been covering Sarah in her final days and inevitably her final moments, and Castles, her best toy, the trusty pink unicorn who never left her side during her four years of treatment. Andrea drove my car home, and she asked me if I had any thoughts about funeral arrangements. I decided in that moment, remembering the blood that had come out of Sarah's nose, that I didn't want a viewing. Sarah was very close to Andrea's children, her daughter Savannah was her best friend, and I wanted them to be able to say goodbye without having to be traumatized by seeing their friend that way. After what I had seen that night, I didn't want to see her that way anymore. When I thought of Sarah, when I think of her now, I don't think of her death. I think of the life she lived, how happy she was, how happy she made everyone around her. To date, I have only ever met one person who wasn't completely in love with her. I wanted to honor her memory, so we decided on a memorial service, where we could all remember this gorgeous creature who graced our lives, remember the beauty of her life, not the bitterness of her death. Sarah would have wanted it that way.

We got to my house around 6 am, and it was equally as hard walking into the house without Sarah as it was leaving the hospital without her. I broke down in tears, Andrea stayed for a moment, then drove my car home. My grandmother made my mother and I some chamomile tea and toast, I don't know how long it had been since I had eaten. My mother and I talked for awhile, and the first phone call came about an hour later, from my estranged uncle's wife, to whom we hadn't spoken in about three years. My mother hung up on her, and we talked about that for awhile before the melatonin she and Andrea made me take started to kick in. I climbed into my bed, covered up with Sarah's blanket and held Castles. I put on a Netflix movie for background noise. I slept for a few hours, then got up and dressed so that we could attempt to make some funeral arrangements. I couldn't bear the thought of my baby laying in that morgue any longer than was absolutely necessary.

We were offered discounts with two different funeral homes, but something, probably my bossy daughter, kept telling me to go to Rose Hills. It's beautiful there, and Sarah loved flowers. We were going to cremate her, and bring the ashes home, but something kept telling me to go there. So I told my mom that we could go see what it was about, and if it was too expensive we would go with one of the other funeral homes. As it turns out, it wasn't bad at all, they were more than supportive and helpful, and in a chapel that seats 200, there was still standing room only.

I did not hear from her father for two days, until I was forced to call him because I wasn't allowed to make any funeral arrangements without his consent. I dragged him in there by his ear, and he sat as far from us as he could, since I had my mother, my aunt and my pregnant sister just waiting for him to say the wrong thing. The funeral coordinator asked if we would be separating the ashes, indicating Sarah's father out of the corner of her eye. I had listed two separate addresses for us, and given the atmosphere in the room, I think she got the hint that we are separated. I didn't even look his way, and I answered her with an emphatic "No." "No?" she said, again indicating Sarah's father out of the corner of her eye. "No." I replied again, just as firmly. I could feel his eyes on me, but I didn't acknowledge him. He didn't argue. When the coordinator asked what we would be doing with the ashes, I told her that MY daughter was coming home with ME. Again, I could feel his eyes on me, but he said nothing. The coordinator was gracious enough to skip to the part he needed to be there for, and as soon as he signed everything, he left. I wasn't surprised, nor did I care.

We stayed longer, of course, making all of the arrangements, trying not to laugh when they kept referring to my baby as "The Cremains". I suppose it's a technical term they have adopted, a combination of "cremated remains", but given the somber and sympathetic tone they usually adopt when dealing with grieving families, it sounded so incongruous to use a term that sounds like it came off the menu at McDonald's. Kathie, Nick, my sister and I all waxed intellectual (and hilarious!) about it later on. "Back for a limited time! The Cremains!" "Get your Cremains while they last!" "Yes, I'll take some Cremains, and a diet Coke, please." Nevertheless, everything was done, and Sarah's father called me later to see what we had decided. I gave him the information, and ended the conversation.

The next few days were a blur of errands and sleepless nights. I can see now why people pre-arrange funerals, although I can also understand why we never did for Sarah. It seemed too macabre, like we were giving up on her, and even her doctors expected her to survive. She was so strong. They never thought, we never thought, she would be the one to go. Sarah pushed us towards what she would have wanted. The gorgeous chapel for her service, the pink urn with the tiara in Swarovski crystals that had to be handmade and normally takes three weeks to deliver but that miraculously was able to be rushed and arrived two days before she was even cremated. The balloon release that was tacked on at the last minute, because several people who don't normally communicate got the same idea at the exact same time. True to form, my little Bossy Boots was still bossing us around.

The service itself was beautiful. Everyone spoke to how incredible my daughter was, and it was an amazing way to honor  her memory, if you don't mention the egregious way her father behaved. Inside the chapel, he was a mess, sobbing, clutching her urn to his chest like a baby, carrying on like anyone would expect of a grieving father. Then he kept going outside, and would be totally fine, talking and laughing with his friends as though nothing had happened, as though it were any other Saturday at the park. Then he would come inside, and put on a show, then go back out, and be fine. This is all second hand from several sources, I was too busy receiving condolences to keep tabs on him. Later on, while I was at the comedy fundraiser the Silver and Black Angels Foundation put on for our family and Trevor's, I received a text telling me that he was out there with his friends talking about his new girlfriend. Later still, it was divulged to me that not only was he talking about her, he was bragging about all of their sexual escapades. AT HIS DAUGHTER'S FUNERAL. I have long since come to terms with the fact that this man has no respect for me. But never in a million years did I ever think he would disrespect his daughter in this way. On the way home, I was quiet for a long time, thinking. Then as we were getting out of the car, unloading, I asked my mother to fill out the divorce papers. When Sarah's father asked me for a divorce back in December, on Sarah's birthday, the last she would ever have, three days before Christmas, the last she would ever have, in a TEXT MESSAGE after 11 years of being together, I refused to lift a finger. I told him that since he was the one asking for the divorce, he could do all the work. But on my way home from my daughter's funeral, I realized that it wasn't about punishing him, it was about setting myself free. The only part of him I still wanted was gone. I had already lost the one thing that mattered the most to me in the world.

Up until then, I had mixed feelings toward him. A lot of anger, resentment, especially for the way he wasn't there for Sarah like he should have been, for the way he should have been there for me and never was. Even some residual love, but all of that left when Sarah did. None of it mattered anymore. I lost the one thing that was everything to me. I have truly lost most of what people value. I lost my job and my foothold in my career path. I lost my husband to a woman who is nowhere near worthy, and nowhere near better than me, I lost my stepchildren, who I helped raise, but they hate me now, God knows why. If it wasn't for my mother, I would be homeless, literally. But all of that, I can rebuild. I can find another man, a better man, one who deserves me, and one whom I deserve. I can possibly have more children, I can rebuild my career, or find a new one. But I will never have another Sarah. Her loss is the most devastating thing one can experience, and everything else is small in comparison. Let her have him, they deserve each other. How could I ever look at him again and feel anything but disgust at his behavior?

Now, I am sort of bouncing around, lost, trying to find my way. I devoted my entire life to my husband, his children, and their many problems, Sarah, and Sarah's illness. For the first time in my life, there is no one for me to take care of, no one for me to mother. I don't quite know what to do with myself, but I will say that I am overwhelmed and so, SO grateful for the outpouring of love and support I have received. I have a lot of people on my side, a lot of people looking out for me, the best one being my new angel, so I know that sooner or later, I will find my way. People tell me that they don't know how I am holding up this well, and my answer is always the same. Sarah didn't like anyone to be upset, and if God took her, it was because she was done here. She had fulfilled her purpose, and she touched many lives. If he left me here, it was also for a reason, and I need to figure out what that is. I am just so honored that I was chosen to be her mother, that I was the one who had the privilege of bringing such an amazing creature into the world, and that she did such amazing things while she was here. I am grateful for the time that we had together, grateful for each day that I got to be her mom. If Sarah has taught me anything, it's that each day is a gift, the beauty of life is in it's simplicity. Life is really very simple, it's people who are complicated, and we need to find the beauty in the little things. Life is too short to be anything but happy, so while I cry every day because I miss her SO much, I try my best to be happy because it's what she would have wanted. All I have done her entire life is try to be someone she could be proud of. That doesn't end now. I will always be her mother, she will always be my baby. I will spend the rest of my life trying to make her proud.




Wednesday, April 3, 2013

Freaking Decitabine, work already!!!!

This week has been crazy, as have been the last couple of weeks/months/years, depending on when you start counting, and I don't even know where to begin, so I guess I'll just dive right in and trust you'll forgive me if it doesn't make any sense.

Healthwise, Sarah's counts have been steadily climbing, and it seems that now that we have hauled out the big guns and given her more decitabine early, her cancer has decided to fight back with a vengeance. Her white cells went from normal to slightly high, to !!!! to WTF? Seriously??? in a matter of days. Normal white cell count is between 4 and 10. She has been riding the 60's all week, and today, day 3 of decitabine, she was in the 80's. Her doctor, our beloved Dr. Horvath, told me not to worry, as she always does, but I can see the worry in her own eyes, the determination to figure something out to keep this little girl here because she wants to win this fight as much as we all do. All of the doctors have told me that while she has been feeling pretty well for awhile, they don't know how long we can keep this up, and really, all we're doing is trying to buy her more good days. Which she has gotten, thankfully, but with white counts that dangerously high, there is that nagging thought in the back of my mind. Are we here? Is this it? I wouldn't hospitalize her if that were the case, I know my daughter, she'd rather be home, but is this where we are? Am I about to lose the one thing I have left?

I close my eyes, and I pray, pray for God to keep her here, pray for God to give me strength to get through this because my own seemingly bulletproof facade is waning. She looks so good. She seems to feel good. She's eating, laughing, playing. I don't understand. Her doctors don't understand. There isn't much they can tell me, other than that we are doing the best we can, and they don't know how long we can keep this up. They tell me to be strong, to have faith, to call with any questions. Dr. Horvath checks her labs from home on her day off and brings my baby flowers from her garden that make her smile. I know these are the best doctors and nurses we could ask for. I know they love her almost as much as I do, and would and have gone above and beyond to keep her safe and happy. My mother's instinct still feels her here, distinctly. I do not feel her pulling away from me. So why am I scared shitless?

I'm scared because numbers are numbers and math has never been my friend. I'm scared because everyone keeps telling me that cancer feeds on sugar and I need to cut it out of her diet, but when my child asks me for a candy bar, and her doctors are telling me they don't know when the last day might be, I don't want to spend eternity kicking myself over a damned Hershey bar. She doesn't get to go to school, or play in the park, or attend birthday parties like normal kids. You want me to slap the cookies out of her hand, too, when all she wants is some semblance of a normal childhood? I know that people mean well, I know they truly have her best interests at heart, but the way I see it, if I can authorize people to poke and prod and cut and pump her full of poison in order to save her life, if she has suffered all of this shit with a smile since she was not even TWO, then let the child eat her fucking Hershey bar in peace. This shit started before she'd even had her first lollipop. I weed it out where I can, but my philosophy is balance. Too much of anything is never good. But telling a cancer mom that she should deny sugar and carbs (which convert to sugar in the body) to her already underweight FIVE YEAR OLD, and that unless she does she is sealing her fate, is tantamount to blaming her cancer and her subsequent possible demise on me. Not cool. (P.S. I have heard the sugar thing from several people, but the person that pissed me off doesn't read this blog, so if you are reading this, don't worry, it wasn't you! lol)

I am trying like hell to just keep my head in the game, trying to control my own frustrations and keep from taking them out on my daughter, because if these truly are our final days, I don't want them to be spent with me yelling at her. I know that if she doesn't make it, I will regret it always. So I hold her close. I read when she asks me to. I kiss her cheeks and play with her as much as I can. I watch her sleep and I pray through my tears that somehow, someway, God will let her stay, because there is nothing else to do. I don't understand this, and I am barely holding on, but I know that HE does, so I have to trust that He knows what He's doing.

More than anything, I have to put on a brave front for my daughter. She worries about me, more than she should. That breaks my heart, but it's true. Today, she saw the worry on my face as I was overlooking the lab sheet, heard me sigh while she played on the floor, and she said, "What? What is it?" I told her that her white cells were climbing too high, and she got scared and asked what would happen to her. I lightened my face, smiled and told her that nothing would happen, that everything would be fine, and I have to believe that one way or another it will be. If this is it, I don't want her to spend the time worrying about something we can't fix. I don't want her to be scared. I am scared enough for us both. This is the loneliest feeling in the world, but I want her to know that she has a world full of people on her side. All we can do is pray that tomorrow brings us better news, and that some miracle will save her life.

And, I could take a few cues from her, you know? Worry only about what outfit I'll wear tomorrow, which Lalaloopsies we'll take to OPI and make poor Mitzy, Paul and Marie earn their paychecks! What should we take for lunch, and what kind of surprise will Dr,. Horvath bring? You know, the important things.

After a long day of decitabine and a port flush, Sarah got a bubble set from the Child Life closet as a prize for being good through her port flush. All she talked about the whole way home was blowing bubbles on the porch. Luckily, there was just enough daylight left when we pulled into the driveway to blow a few bubbles. We sat on the porch, she ran around and blew bubbles at all the cars, laughed when they popped on tree branches or on me. She plucked flowers from the bushes and put them in my hair, I tucked a stem behind her ear. "Let's spread happiness, Momma!" she cried as she spun around in a circle, bubble wand extended. I took picture after picture as the sun set. I didn't want to forget her like this, she will not be this child forever. It takes so little to make her happy, which is ironically why she's so spoiled and has enough toys for ten children. She gets excited when we come home from the grocery store. Thousands of dollars worth of toys inside the house and out, and some soap and flowers is all it takes to make her smile that genuine smile I rarely get to capture on film since she adopted that fake, wild-eyed creepy grin kids get in photos around this age. For awhile, I forgot about her counts. I focused on my child, on her happiness, and that was all that mattered. It is all that matters, the two of us, together.