Don’t give a crazy person extra crazy…

I think it’s kinda interesting that someone keeps extending my credit line of CRAZY. Clearly, I’ve abused my crazy privileges. I bought more and more crazy just to clutter up my closets with crazy. And just when I maxed out my crazy credit line, I get a nice letter from the crazy credit managers stating “Congratulations! We’ve extended your CRAZY another 20 gazillion points!” My crazy rating is clearly through the roof. Fortunately, this new situation of dealing with Ben’s return of neuroblastoma should be covered by this new extension of crazy credit. But I think this purchase will totally max it out. I’ve got NOTHING left for collateral.

I wonder if I can file bankruptcy on this? Go to crazy court, tell them I can’t pay, and then they’ll say, “Well, Sarah, we’re going to have to take Ben’s cancer back since your credit line of crazy has been overextended.” Hey! Fine by me! I like that plan. Repossess that tumor. Sell it off at a police auction. Lock it away with the Arc of the Covenant from Indiana Jones. While you’re at it, I have some other things I’d like to relinquish to the crazy court.

Unfortunately, it just doesn’t work that way. Crazy girl can’t catch a break.

So… I’m currently crazy because my son has surgery tomorrow. Or, if you’re with the rest of my family and friends in the Eastern Time Zone, today. He has two hours left to eat before his midnight (MDT) deadline. Surgery is about 15 hours away and I think crazy is going to keep me up for a while tonight. Oh, who am I kidding? Surgery never happens on time… we’re probably looking at a much longer wait. We’re due to go in at 12:45… I’m betting that it’s closer to 3 pm. Just a guess. Place your bets!!

The surgery will be to place a mediport, complete a bone marrow biopsy to ensure there’s no disease in his marrow, and to take out that tumor. They’ve scheduled him for three hours in the operating room so I imagine it’ll take around two. I know port placement and bone marrow biopsies are generally quick. We just don’t know what that tumor is all about. I’m hoping it has its bags packed, has rounded up any of its crazy cancer family, and is ready to leave. He’s received his final warning. Eviction day is tomorrow.

I think Ben is handling it well. He said yesterday that he was glad he’d be getting out of school but then confessed today that he’d rather go to school than have surgery. I can appreciate that. Ben is old hat at this surgery gig. I know he’s “concerned” but he won’t let it keep him awake like I will. So, I bought Ben a new Lego set to work on while he’s waiting and starving… a good distraction for both. Keep those hands and mind occupied. I’m taking coloring books for Madeline and I… coloring is one of the best ways to soothe myself. I should also state that if you’re lucky enough to have my phone number, I’d certainly take amusing texts from you at any time. Distract me, please!

Otherwise, I’ll just be looking for other ways to max out my credit line of crazy. I’m afraid it’s becoming a habit. I’m sad about it and would love to change it, but more just keeps getting added. I wish I had the option of canceling my credit line and running that stupid card through a wood chipper.

I’m clearly drowning in crazy.

WAIT!

I’m sitting here on my couch (surprise, surprise) waiting for this storm that’s been threatening all day to finally come and get down to business. It seems like it has a plan and then changes its mind. It’s been screwing with me all day. Funny how the weather is totally in sync with my current situation. AAAAARRRRRRGGGGGH!

NEWS FLASH: We’ve been disinvited to Cincinnati. We didn’t fully break up, they just simply told us that it wasn’t going to work out at this time. So, it’s more like they deactivated their facebook account to take a break rather than coldly “unfriending” us. Here’s why: Ben doesn’t have enough stem-cells collected to serve as a “rescue” after he gets a high dose of radiation in Cincinnati. We knew this and I even stated this fact at our meeting with the doctors nearly two weeks ago. I didn’t think there were enough left over from the stem-cell harvest he had when Madeline was born. Most of them were used for his transplant and then another bag was used after a chemo in NYC three years ago. Those procedures used all but one tiny little bag of precious stem-cells.

So, the option was to harvest some more stem-cells and THEN get the MIBG therapy in Cincinnati. That would have pushed our trip to Cincinnati back to at least mid-July because harvesting stem-cells is a multi-step process. But wait. The plan changes yet again. After further consultation between Denver and Cincinnati, they’ve decided the following: surgery to install a mediport, complete a bone marrow biopsy to make sure there’s no disease in his bone marrow, AND take that stupid tumor out of Ben here in Denver. This will most likely happen tomorrow or Friday.

Then, (probably) chemo will start on Monday. Chemo. He’s going to lose his hair. Again. I don’t know why I take that so hard, but I always do. They’ll send that stupid tumor off to a lab where they’ll try to figure out the proteins, and if there’s a current chemotherapy out there that might be helpful. In the meantime, he’ll hopefully be able to go to Camp Wapiyapi. He might be a little sick, but hopefully not to the point of making camp completely miserable.

Seeing how they’ll be taking out the tumor in the next couple of days, this leaves the Cincinnati team with nothing to follow. They won’t be able to see if the MIBG therapy helped him or not, so Ben will no longer be eligible for that particular study. Here are my thoughts on that: Get the freaking cancer out of him RIGHT NOW! One of the things that was bothering me was the fact that the tumor was in there doing who knows what. If we get it out tomorrow or the next day, I will breathe a big sigh of relief. I am disappointed that this therapy isn’t going to work to his advantage now, and I’m terribly disappointed that his birthday party (that we were all looking forward to) is not going to happen. Maybe we can all make a trip to OH later in the summer? One can hope.

After the first round of chemo, he’ll have a break and then another round (for two total). Then they’ll harvest some stem-cells to use if MIBG therapy ever becomes an option again. I’d rather have backup than nothing at all. All of these procedures will happen in Denver.

So, the plan has changed. I’m sure if we wait a little while longer it’ll change again. Cancer plays like that. It’s a storm that just looms over you and always catches you off guard. You know the threat is there. Sometimes it lets you get out your umbrella. But usually it doesn’t.

Side note: I just found salsa in my hair.

 

 

Sleep is overrated?

I am so mad and frustrated that I cannot focus enough to write coherently. Maybe it’s because I’m not sleeping well. Maybe it’s because I’m feeling more than overwhelmed. I can hear somebody saying, “Sarah, Don’t Sweat the Small Stuff (and it’s all small stuff)” Oh yeah? Well, come over here and say that to my face. I’ll knock your lights out.

Now, I haven’t ever really punched anyone except one person in self-defense a LONG time ago. And that was a pretty girly punch. I have dreams where I’m punching things to protect something I love but it nearly always feels like I’m punching oatmeal. Not very satisfying. I have always thought that places like Children’s Hospital and the Ronald McDonald House really missed the boat on not putting a punching bag in some dark corner for parents to beat the crap out of. It would be so cathartic. And, if you figured out a way to generate power from parents’ anger, you could keep whole societies in electricity for years, much like “Monster’s Inc.” using children’s screams for energy. See what my mind does when it gets no rest? You thought I was weird before? You ain’t seen nothing yet. I’m sure it’s just going to get more entertaining in future months.

My sleep pattern over the last few years has been less than stellar but it has gotten way worse over the last couple of weeks. Duh. I wonder why? I’ve always been a worrier despite the fact that worrying usually just makes an average situation worse. I used to wake up in the middle of the night worrying about stupid stuff that really wasn’t that important and while I’m glad that I’ve gotten over worrying about stupid stuff I know have something larger to worry about. Despite my attempts to self-soothe I just cannot find a way around not worrying about Ben’s illness. If it would go away, I’d have a much easier time not worrying about it. But it won’t do that. It just won’t go away.

Several years ago, someone gave me a copy of that stupid book, “Don’t Sweat the Small Stuff (and it’s all small stuff)” That book was an International Best Seller. I remember reading it and thinking that it was baloney. It made me mad. There might be degrees of “small stuff to not worry about” but this does not fall into any of those categories. Oh, I understand the need to have hope and look on the bright side and all that jazz, but honestly? Don’t worry about this? I’d like to see you try. My children are my everything. I’m mad that this is happening to them. And, happening to me. No mother should ever have to go through this. Ever.

Aaaaaarrrgh! I was hoping that writing would make it better. Would make me relax enough to maybe drift back to sleep. But I’m so jumbled and erratic and tired and scared and angry. I cannot grab onto any one emotion long enough to work through it. FRICK! I just want to punch something. Although I understand that it would be a very girly punch and probably not very cathartic at all.

I’ve heard it all before so there are no words to soothe me at this time. I’m not asking for anyone to make me feel better. At least I’m not today. I think I kinda need to be angry for a while. Besides, it’ll gear me up for the fight that’s about to begin, the fight of getting Ben well. And I know I recently told all of you to not be afraid to talk to me – that I just wanted your love and support – but I would highly recommend to NOT tell me today that God won’t give me more than I can handle. While that might be true, those words will NOT be helpful.

Not today.

 

overwhelmed

I hate when I just sit here on the couch completely incapable of doing anything at all. I don’t have the kids today and I just bet that I’m going to sit here all day and do nothing. I’m completely overwhelmed.

It looks like it’s going to be a beautiful day outside… I could go do something. I could take a drive or hang out at the pool or continue to sit here on the couch and do nothing. For whatever reason, I cannot get motivated unless I absolutely HAVE to do something. And since I know I have to rally to help Ben fight cancer again, I guess there’s nothing wrong with taking a day to sit on my couch. Alright, I confess. ANOTHER day. I’ve already had a few days of doing nothing since learning of his relapse on the 16th.

Okay, here’s something that’s bothering me. Someone posted a picture on Facebook of their dead child being taken away in what I assume to be a funeral home’s van. This child died of cancer. I understand that there must be immeasurable grief. I cannot imagine what they must be going through. My heart aches for them and screams at the unfairness of it all. We all have to get our grief out somehow.

But posting a picture? I’m all for raising awareness. And this is an unbelievably tragic situation. WE NEED HELP. The picture was powerful but I just wasn’t in a position to see that. I wasn’t mentally ready to see that because it’s my absolute worst fear. Then it made me wonder: how many people truly care? I know when Ben relapsed the first time, many people rallied around and supported my family. But I learned through a friend that someone I considered to be a friend actually stated “We KNOW he has cancer. We’re all kinda tired of hearing about it all the time.” My feelings were hurt and, of course, I never confronted that person to see if that statement was truly how they felt, but I thought that I should be more guarded in what I share. Most people are genuinely interested in knowing how Ben is doing. But I imagine there ARE some people who get overwhelmed with the information I share. It is heartbreaking. And I understand that many people have a lot of other crap going on. But this is my life and how I’m living it. My son has cancer. That consumes nearly every moment of my day – and has for a long time. My writing about it is my outlet. And since Ben has relapsed, I’ve been inundated with friend requests, mostly from concerned people who want to support us and people in the same battle we are. But, in a strange twist of events, I’m not sure I’m ready to be friends with so many people fighting the same battle. My head can’t wrap around the sadness of all these dying children who are losing their battles. It’s not that I don’t care, I just don’t think I can handle any more.

And seeing how I got my feelings hurt when this “friend” told someone else that they were tired of hearing about Ben’s illness, I hate to think I’m hurting someone else’s feelings because I cannot deal with their sadness right now. I guess I should give myself some grace. I can’t fight everyone’s battle. I can only fight the one in front of me.

So, a crusader I’m not. I’m not going to change the world and encourage everyone to get out there and find a cure. I can only focus on the challenge right in front of me. My darling son. I hope you’re with me and along for the journey. I’m sorry it’s all I talk about. Trust me, I’d rather be doing something else myself.

But for now, I’m going to sit on this couch and be totally overwhelmed.

five stages

Sometime around 1969 Elisabeth Kubler-Ross came up with the five stages of grieving, which was eventually published in her opus “On Death and Dying.” She suggested that people dealing with major grief-causing events experienced the following stages (not in any particular order): Denial, Anger, Bargaining, Depression, and Acceptance.

I would argue that I deal with these stages on a regular basis for everyday, mundane events. Grief-Causing Event: Having to Get Out of Bed. STAGES – DENIAL: NOOOOO! It can’t be TRUE! I just fell asleep two hours ago! It’s not possible that I have to get up already! ANGER: Dammit, WHY do I HAVE TO? This is so ridiculously unfair! I’m going to make everyone’s life MISERABLE if I have to get out of bed. BARGAINING: Can’t I just have five more minutes? I will be a much happier person if I can just have five more minutes. I’ll give you something you want in return. You want that new toy, right? Five more minutes of sleep and it’s yours.  DEPRESSION: If I just kill myself now I can stay in bed forever. ACCEPTANCE: Well, the dogs aren’t going to walk themselves. I might as well get up before they pee on the carpet again.

This would also be true if I was at a restaurant that served only Coke products. “What do you mean I can’t have a Mountain Dew? Do you know how sorry I’m going to make you if I don’t get my Mountain Dew?” I do eventually accept it, however, and order a Coke. But I’m pretty darn depressed about it.

So imagine my poor little mind as it tries to wrap itself around my son’s cancer relapse. Having been through the stages before, I moved fairly quickly through Denial and am now stuck on Anger. Mixed with Depression. With a side of Acceptance. I know there’s no reason to Bargain. Cancer doesn’t care. If I promise to appreciate every single day I have with my children it will not change the fact that my son has cancer again. If I become a better person. Or a more frequent church-goer. Or brush my teeth after every meal (snacks included) it will NOT change the fact that my son has cancer. Bargaining has proven to be a worthless effort. I’m going to remain the same person I am who hates to put away laundry and is a professional procrastinator. Who loves to start projects but never finishes them. But who wildly loves her children and actually enjoys spending time with them. Changing my “evil ways” is not going to change the fact that Ben has cancer. So, for all you weirdos who say I’ve brought this on myself, I have some choice words for you. And since you’re all experts on how I should be handling MY life, I’m sure you can figure out those words all by yourself.

Yeah, I’m stuck in the anger phase. Ben is a wonderful boy who doesn’t deserve any of this. No child does. But, right now, I can see him playing on his computer and eating some Doritos and feeling pretty darn good, so I’m trying to feel good, too. And, we have a plan. Sometime around June 20th we’re traveling to Cincinnati to consult with Dr. Brian Weiss at Cincinnati Children’s Hospital. Matt and Madeline will be traveling along, too, so after our consultation we’ll head to Columbus to see family and friends. I’ll be staying with my dad in Bexley. Ben’s birthday is Saturday, June 22, so we’re hoping to hold an open house where people can come and visit (or meet for the first time!) the amazing Bean and Madeline! Icing Smiles has agreed to supply him with a birthday cake and I’m sure we’ll get Donatos because that’s Ben’s favorite (mine, too). Details are in process and I’ll send out an evite or facebook event or something. If you’re not my pal on FB, you can send me your email address and I’ll make sure you’re aware of the details as we get closer to the event.

Then, we’ll be heading back to Cincinnati the following week to get radioactive. Madeline will stay in Columbus, so anyone wanting to entertain her for an afternoon or so, let me know. She needs some high doses of feeling special.

I’m feeling better about having a plan, but dammit, I’m still mad. And sad. And briefly accepting. Our lives have entered into a new phase that I’m not happy about and while I should focus on using my five stages to get through Ben’s cancer, I can’t help but go through them every time I have to do laundry. Or walk the dogs. Or go downstairs to get myself a Mountain Dew.

It seems like every little event is completely debilitating. Stupid Cancer. You do NOT know how to throw a party. So, I’m uninviting you.

 

brain no workee

Bzzzzzzzzzz. Bzzzzzzzz. BZZZZZZZZ!!!!

I hear you. I’m just ignoring you. Maybe that buzzing is the start of an ear infection? Perhaps a bug has moved in? Or maybe I have ear cancer? I’ll have to have an ear-ectomy. Buzz buzz buzz. Please, for the love of the Pete, please stop with the buzzing already. I have no remedy for the horrible sound you’re making inside my head.

Ha! I just said For The Love of The Pete. Ben used to say that when he was a toddler. Actually, it was with a “W” sounding “L”, so he actually said “for da wuv of da Pete.” He had a tough time with L’s like I have a tough time with R’s. Madewin. Wegos. Wadies. When Ben was first diagnosed with NB and we basically lived in the hospital, he often would take charge of small tasks like telling the nurses when his infusion of chemo was complete. The machine would make this horrible beeping noise that could only be stopped by a nurse. Honestly, I thought the machine should make a happier noise, perhaps something like the “Mexican Hat Dance” when chemo was complete. After all, isn’t that a moment worthy of a happy song? Chemo is done! Let’s party! But no. The beeping was similar to an annoying car alarm that could only be stopped by the owner, who had unfortunately left the country on walkabout. The battery would have to die before it would stop. Now, I, as a parent, had the power to push the snooze button, but I could not stop it. Only a professional could do that. So, when the beeping would start, Ben would call the nurses on the intercom. With his sweet toddler voice he’d say something like “Wadies, my ma-chine is beeping.” He said machine as if it were two separate words and didn’t give the “ch” an “s” sound. He said the “ch” like chain. Combined with his W for L in the Ladies, it made for a heart-melting sentence.

He is so freaking cute. He makes my heart melt all the time. A couple of days ago we went to see his pediatrician to discuss his ADHD medication increase. He has a hard time focusing at school so he takes ritalin only on school days. However, given the new course that cancer has charted for us, the ritalin issue was not what we discussed. Ben’s pediatrician is a very sweet lady. She was asking him questions about his relapse – wanting it in his own words. I had to bite my tongue to keep from answering questions for him in adult terms, whatever that sounds like. So, as he said it, “The cancer is back. I have to fight again.” Matter-of-fact. Not much emotion. He’s sad but he knows that complaining about it isn’t going to make it go away. As we were getting ready to leave, she asked him if she could give him some money to buy a video game for his DS. He said, “No, I have my own savings account. I can get something for myself.”

MELT. Melty, melty, melt.

So, this good kid, this wonderful child who has a heart of gold, has to battle again. But he just keeps at life with the same tenacity as usual. Cancer is his bully. Cancer is jealous of the light and love that this sweet boy exhibits. Cancer is only black and awful and hateful and destructive. And while it knows no bounds of who it attacks I hate it for attacking the sweetest kid in the world. I know I’m biased. But I think 9.8 out of 10 people agree that Ben is nothing short of amazing. I sure do hope he gets to grow up. He’ll make an incredible adult. I want to be just like him when I finally reach maturity.

Life is to be lived. Things happen that will throw us off course. Sometimes violently. But the fact is that we have to keep moving. Time waits for no one. So, get out there and make the most of today, friends. However, while you’re doing that, I’m going to sit in my dark corner and listen to my buzzing brain and NOT do laundry.

Taking my own advice is obviously something I’m not good at.

Wiley

The night before we left Kansas City last week, I asked my dear girlfriend, Dawna, for a word to write about. She chose Wiley, which is the name of her dog as well as her maiden name. I was in the mode of still asking for words to write about because I had no idea that *BEEEEEEEEEEEEEEP* (censored due to copious amounts of foul language) cancer was planning to ruin our day, which would end up changing the course of my writing altogether.

One of the best parts of getting on that study in Kansas City was the fact that I’d have Dawna for support. It made such a difference. I did eventually make friends with the folks at the Ronald McDonald House in New York City, but we were all in the same boat. We were all fighting. We were all talking about our children. The camaraderie was strong, but it could be overwhelming when a child lost their battle or there was a setback in their treatment, etc. The nice thing about Dawna is we just got to BE. I was always a scanxious mess the few times that we did travel to KC but she did her best to distract me. We’d watch TV, drink wine (which you aren’t supposed to do at the Ronald) and laugh about stupid stuff.

I met Dawna when I lived in Summit County. I worked at a bank with a bunch of ladies I didn’t really have anything in common with. I think what it came down to is that they were a bunch of catty b*tches and I never had any interest in playing their games. Plus, all the officers loved me and said things like “I wish I could clone you. You are a great employee.” All the other ladies were jealous. So, when Dawna came in for her interview, all the ladies gathered around to judge before they even met her. As I avoided their blathering, I stated out loud, “That girl WILL be my friend,” which did nothing to solidify my membership with their group.

Dawna got hired and she did become my BFF. She felt the same way about the other catty b*tches at the bank as I did. We were a team. We had a blast working the drive-thru together. We started hanging out after work which morphed into spending days off together. She took me to my very first Target on what became known as “Big Fun Days.” There was no true shopping in Summit County so we’d have to travel to Denver. We had so much fun.

I moved away from Summit County first. And then she moved back to Missouri, but we maintained contact. The beautiful thing about our friendship is we can go for ages without talking but the moment we’re back in contact it’s as if we were never apart. So, when Ben had the option of treatment in KC, she offered her home to us. It was nice to stay in an actual house. Dawna has two big dogs who would sleep with us at night. Ben loved that. I think dogs – or animals in general – are a comfort to him. Jack and Wiley were great at loving on Ben and Dawna was great at loving on me. She’d let me be weird if I needed to be. She’d supply me with a beer after a long day at the hospital. Her comfort knew no bounds and I was so grateful. So when I called her from the hospital last Thursday with the incapability to say any words at all, her answer was, “I’ll be right there.”

She’s always been right there for me, my sweet Dawna. I know I am safe with her and that’s a rarity in my world. I have a lot of friends but few who get to the center of this Sarah-tootsie-roll pop. She gets me. And, interestingly enough, she’s not afraid of that. 🙂

I don’t know what I would have done without her last week. The journey to the front of the hospital after hearing that news was one of the longest of my life. My knees were as awkward as a newborn colt. My breath as if I’d just finished a marathon. My grip on Ben’s hand holding on for dear life. Cancer couldn’t take him away if I was holding on as hard as I was. Someone helped us cross the finish line to the outside. I don’t know who that person was. I’m glad she was there, whoever she was. She got us to a bench where we could wait for Dawna to pick us up. Ben held my hand, comforting ME (epic mom fail) as I maniacally yo-yo’d between body-wracking sobs and indignation (complete with Hitler-esque hand gestures) that we’d beat it again. When she pulled in to the hospital roundabout, she hugged Ben first. Choking back the tears. The pain obvious even behind her fashionable sunglasses. And then she hugged me. My weak knees strengthened by the love she’s always had for me. Letting me know in that one amazing hug that she wouldn’t be letting me go. Wouldn’t be letting us go.

So, Dawna Wiley McGill, with a dog named Wiley and a lot of love for a hero named Ben and a wacko friend named Sarah, your immeasurable love is so appreciated. It will help us be as tenacious as another “Wiley”… Wile-E-Coyote, who kept after that stupid Road Runner even though he kept getting beat. Kept getting anvils dropped on his head. Kept falling off that cliff and landing with a distant expulsion of dust – but yet kept surviving. Kept returning. Kept fighting. We’ll do the same.

I know. Stupid analogy. But it fit. And I know she’ll still love me despite my being a complete dork.

 

Missing mom

It hasn’t even been a week yet since I heard the news that my son had relapsed, but it feels like a million years ago. We’re waiting to know more about our planned course of attack and if we’ll be traveling to Cincinnati or Philadelphia or somewhere else. Meanwhile, all I can think about is that stupid tumor hanging out in my son’s chest. If cancer could speak I’m sure it would only have nefarious things to say. Perhaps it is saying something like “you can’t stop me now” or “I’m getting ready for a growth spurt” or “I’m not happy with my current view, I’m going to move to another room.” I just want it out of my son. I just want to stop it. It cannot grow and it cannot spread. I’m just not going to give it permission to do so. Too bad it doesn’t care what I have to say.

There’s no scrapbooking material for this. I sincerely enjoy documenting my children’s lives because I know I was obsessed with my tiny pink baby book that mom only filled in a 1/4 of the way (second child, Vietnam war, I’m sure there was a good reason for her to give it minimal effort.) However, I LOVE taking pictures and I LOVE writing about how awesome my children are. But in this fight for Ben’s life, I’ve really struggled with how to document that. It’s a story that deserves to be told, but not in a traditional scrapbook way. There’s no “Watch My Tumor Grow” stickers or “I excel at chemotherapy” pages. No trophies to be given for multiple surgeries. No awards for participation. They DO have this kind of stuff for breast cancer, but they traditionally get all the attention. People tend to think that’s the only kind of cancer out there. Anyway, I’m kinda peeved that this has taken up so much of Ben’s life and while I know the bravery aspect is something to be documented, the rest of it just isn’t. So not fair for my Ben.

So, last week when I learned the news of his relapse, I was heartbroken on so many levels. And after speaking briefly to key players in Ben’s journey, I picked up the phone to make one more phone call. I started punching in the familiar numbers knowing that the person on the other end was going to understand. Was going to comfort. Was going to share in my grief. Would drop everything to come to me. Would hold me in her arms until the sobbing stopped. Would make sure we had everything we needed to get us through this one more time. Would drive me absolutely insane, but that’s what mothers do. And to realize that I’d lost her more than two years ago definitely added insult to injury.

My mom did drive me crazy. We fought a lot. But when it came to Ben, she was an excellent caregiver. She was always at the hospital. She offered respite when it was needed. She loved Ben with her entire being. And when Madeline was born shortly after Ben’s diagnosis, my mom formed a bond with that little girl that was nothing but love. She bought Madeline a million pairs of shoes before Mad could even walk! She had the most spectacular wardrobe of any toddler in the universe. I think Madeline was a focus that my mom needed. Something that Madeline needed. Mom loved all of her grandchildren but the bond between the two of them was beautiful. I miss it. Madeline misses it. We miss her.

The fact that today would have been mom’s 70th birthday, well, I wish we had a better way to celebrate than to be waiting to learn – once again – what Ben’s treatment protocol will be. But it is what it is. In the meantime, Mom, I’ll imagine your hand wrapped around mine. Your fingers running across my aging hands that have turned out to be just like yours. Then you’ll say something totally inappropriate that will make me laugh. We were good at that, weren’t we? Our sick sense of humor got us through all the crap.

And even though you drove me insane, I sure wish you were here to hold me. To tell me that it was somehow going to be alright. That I’ve made you proud by being an excellent mom to Ben and Madeline. That would be the best compliment ever.

Happy Birthday, Mom. If Heaven throws birthday parties, I hope they all chip in and get you a kitten. Or some flowers. Or a new outfit from St. John. And, of course, some new shoes.

I need you. I miss you. I love you. Happy Birthday.

This woman’s work

Most of you know I enjoy music and I often take snippets of songs and sing them as a mantra to soothe me when I don’t know what else to do. “Give Me Love” by George Harrison has always been a favorite in times of great need. Of course, “Blackbird” and “Here comes the sun” were popular while Ben was in treatment. Whenever he would get an erratic heartbeat or feel horrible, I could sing either of those songs to him and the pain would subside a little. Of course, Bob Marley’s “Three Little Birds” is one that Ben, Madeline and I all sing to each other regularly. It’s also Ben’s ringtone when he calls me.

But I noticed that I’d been humming a song to myself as I stared in the mirror wondering who that tired, tear-streaked face belonged to. Or when I rocked myself while sitting on the floor of the shower with water pouring down on my head. Or as I lifted my head to the heavens as the rain pelted my face while asking why? Why is this happening to my son again?

“I know you have a little life in you yet. I know you have a lot of strength left.”

I was doing it subconsciously. I hadn’t heard the song in years. And this morning it came to me what I’d been humming. “This Woman’s Work” by Kate Bush. I woke up this morning at a ridiculous hour to let my dogs out. As they were doing their business I sang to them “I know you have a little life in you yet. I know you have a lot of strength left.” They looked at me like I was losing it. But they’ve never listened to me before so why start now? They eventually stopped cocking their heads as if they were trying to decipher what I was saying and went back to finishing their business.

Ben was not a planned baby. I didn’t think I could have children because of my own battle with cancer. At least, that was the rumor. But as I held that beautiful little being in my arms just moments after he was born, my heart filled my throat. I couldn’t breathe for how beautiful he was. After getting over the fear of not knowing how to change a diaper I looked deep into his eyes that could not focus and told him that we’d figure it out together. And, so far, that plan has served us well.

“I know you have a little life in you yet. I know you have a lot of strength left.”

I’m afraid he’s going to die. I’m afraid that his beautiful soul is just too wonderful for this world. And while I’m grasping at the beautiful privilege of being this amazing boy’s mother I can feel it slipping through my fingers. Don’t get me wrong. Death isn’t looming over his shoulder today. He’s  got a little life in him yet. He’s got a lot of strength yet. But my hopes of his being a normal, healthy boy and growing up to lead a normal, healthy life has been compromised.

I’m not giving up. The facts are just sinking in. And I don’t like it. I think we can keep him stable for a long time. It’s just going to depend on how long he can keep up the fight. How long we can keep him strong. We’ll figure it out together.

This Woman’s Work – Kate Bush

Pray God you can cope.
I stand outside this woman’s work,
This woman’s world.
Ooh, it’s hard on the man,
Now his part is over.
Now starts the craft of the father.

I know you have a little life in you yet.
I know you have a lot of strength left.
I know you have a little life in you yet.
I know you have a lot of strength left.

I should be crying, but I just can’t let it show.
I should be hoping, but I can’t stop thinking

Of all the things I should’ve said,
That I never said.
All the things we should’ve done,
That we never did.
All the things I should’ve given,
But I didn’t.

Oh, darling, make it go,
Make it go away.

Give me these moments back.
Give them back to me.
Give me that little kiss.
Give me your hand.

(I know you have a little life in you yet.
I know you have a lot of strength left.
I know you have a little life in you yet.
I know you have a lot of strength left.)

I should be crying, but I just can’t let it show.
I should be hoping, but I can’t stop thinking

Of all the things we should’ve said,
That were never said.
All the things we should’ve done,
That we never did.
All the things that you needed from me.
All the things that you wanted for me.
All the things that I should’ve given,
But I didn’t.

Oh, darling, make it go away.
Just make it go away now.

Kicked out

I jolted to attention – spine stick straight – searching for breath and clutching at that place on my body where my heart supposedly continues to beat internally. My heart must still be there, for I felt it pounding for a few seconds as I remembered where I was. Home. In bed. Safe? Not sure if that descriptor is accurate. I don’t feel safe at all. Regardless, my jarring body movements would dictate that I’d had a bad dream. And apparently, I’d been thrashing around for a while because my blanket was off the bed and my sheets had lifted to expose my sad and aging mattress. I think I’m prone to some movement during slumber but I’ve never taken the time to videotape my normal sleeping habits. I think this episode was out of the ordinary.

I usually do dream. They are generally very vivid. For a while during my college years I’d been very interested in dream interpretation. But more often than not I found that interpretations wildly fluctuated. So, I started enjoying them for what they were – extensions of my wild imagination. Last night, however, felt really different to me.

I was wearing a beautiful royal blue silk dress. This dress did exist in real life and I’d even worn it once or twice. It belonged to my step-grandmother. She’d had it made for some fabulous event that occurred before I was born. I was born in ’68 for those of you who don’t know so this dress was really old and it was just beautiful. I am very fond of vintage styles and material, so wearing this dress was an amazing real-life experience. Anyway, I was trying to get to a party. I was staying in a hotel downtown with a group of people – a mix of family and friends. Most of them had already caught a limo to the party but I had to wait for a bus. As I was waiting, someone from the hotel came out and told me to move all my stuff out of my room because they just gave my room away to someone else. In a confused state, I unlocked the door to my room to find all my stuff gone and the mattress all rolled up like something you’d find at camp. It was cold and devoid of any personal items. Then I heard a voice tell me they had my stuff and that I should find them so I could have my stuff back. Despite a desperate search, I couldn’t find them. I went to the front desk to see if they would place me somewhere else but no one would help me. Two young co-workers were laughing and giggling – perhaps even flirting with each other – as I frantically tried to get their attention by pleading and eventually screaming. They ignored me. My dress got older. Became faded. And started to wear out at the seams as I continued to unravel myself.

I woke up screaming for help. Clutching my chest. I know it was just a dream but I had the overwhelming feeling that I’d just been kicked out of my life. In fact, when I made that statement to my friend, she said “I think you have been.” It was a sobering thought.

John Lennon wisely said “Life is what happens while you’re making other plans.” I had plans, man. I had given myself the luxury of this year to spend with Ben and Madeline. I have very limited means and I should have a job but I thought it was way more important to spend time with them this year while I got my sh*t together. This summer was going to be one to remember. We were making plans. Making PLANS. making plans.

I know that we’ll find times to have fun. I know we’ll make every effort to find the JOY despite this crummy development. There are camps to go to. Activities to enjoy. Snuggles to savor. Life. It’s not happening according to plan but at least it’s still going to happen. I don’t know how, but we’ll try to make the best of it.

And then it all hits me. The tragedy of it all. Panic tries to set in. And then I tell myself to shut up and find the fricking JOY. Find the GOOD. Savor the NOW. You’d think I’d have learned that over the last nine years. Through almost losing Bean multiple times. Obviously I haven’t learned to embrace the now, or I wouldn’t still be getting smacked in the head with the same lesson.

So, I’ve been kicked out of those prior plans. That life. And I don’t have a choice but to live this one. So I’m just going to do it.