My Darling Ben,

We couldn’t get you comfortable at home. You didn’t have many lucid moments past Sunday morning when the hospice nurse increased your morphine for the fourth day in a row. You started sleeping more.

But what we were doing at home wasn’t enough. It all moved so fast. Your sweet face was so swollen from that horrible bastard of a disease. Relentless fucker. Hadn’t it done enough? No. It was going to make the end miserable, too, by finally showing what it was fully capable of.

A week prior you were meeting your best friend in New Jersey and today you can’t speak to me. And despite a constant increase in pain meds, you’re still experiencing discomfort. We get you through Sunday. We stumble hard through Sunday night. Monday morning we made the decision to move you to the hospice facility.

It was the right thing to do.

Your dad carried you down the stairs and gently placed you on the stretcher. We covered you up to your chin as the EMT’s buckled you in. I went outside with you to the ambulance. The sun was incredibly bright, and your body responded with the appropriate reflex of a wince. A boy walked by on his way to his buddy’s house, curious as to what was happening just a few houses down from his. We locked eyes for a moment and I thought to myself that he probably didn’t even know another boy – my boy – lived in this neighborhood, too. I felt weird about that for a minute and then climbed into the back of the ambulance.

“Talk to him, honey. He can hear you,” the EMT encouraged me as she scribbled on a clipboard. My hands placed on either side of your face, my lips touching your forehead as I whispered and wondered… “can you? Can you hear me?” So I told you a story of how I was pretty sure you would get the job at Rainbow Bridge, greeting all the pets as they arrived. I imagined you responding to me with “You mean I have to get a job in the afterlife? I can’t just “chill out” for a while? And I’ll be pissed if this place doesn’t have WiFi.”

We were at the hospice facility for less than 12 hours. And even though I know what “unresponsive” and “hospice facility” and all those other terrible words mean, I still thought we would somehow come home with you. I know that sounds unreasonable. And, as it turned out, it was totally unreasonable. We left there around midnight. Without you.

I watched you die. In those final moments my eyes were glued to your neck, following your weakening pulse as it slowed… stalled… jumped…. You gasped hard. I think I screamed. I understood immediately and with great clarity the reasoning behind having a DNR because as I was witnessing this, all I could hear was my soul screaming “SOMEBODY PLEASE DO SOMETHING! PLEASE HELP HIM!” I pushed the nurse’s button and they rushed in to be by our side as you died, their hands on my shoulders, knowing what was coming next.

One more labored, gritty breath and then you were gone. Maddy was, thankfully, out of the room when you died. I kinda think you planned it that way… you knew that she needed mercy on this. I know she thinks she failed you because she wasn’t there. If you could do something to alleviate her grief over that, I’d appreciate it.

Also, while we’re asking for favors, know I’m listening for you at every turn and missing you desperately. Your once quiet presence has turned into an excruciatingly loud void. How can you be everywhere and, yet, nowhere? It is absolutely confounding.

This sucks, Ben. I miss you, my darling, and I love you so very much.








I’ve been crouched down on my knees for so long that I can’t remember if I was looking for something or praying. Maybe it was a little of both. But my knees are bleeding from being down here so long, and, since I am days away from turning 50, I’m willing to accept the fact that it’s getting more difficult to get back up again.

Dammit. Please come out. Please allow me to express all of these horribly horrific experiences that are holding my brain hostage. I’m tired of having them in my head… a screenplay for the tragedy that is relentlessly playing out, whipping into a frenzy that I pray will stop but am afraid will stop. I can’t even begin to edit all the footage so it will make any sense and the maudlin soundtrack refuses to modulate to a different key, which I just know would melodically pull us out of this quagmire of defeat.

Ben is in decline. I cannot make my mind conjure up an image other than me standing on a parapet waving a white flag, conceding defeat. Only it’s not my flag to raise. So I rewind the footage in order to erase that it looks like I’m trying to tell him what to do, even though I don’t want him to do that. I’m just tired of seeing him hurt. And I’m sure he’s tired of hurting. He’s got to be so tired.

So tired.

The kicking is getting slower and the urgency of survival is giving in to the promise of rest. Each push of his patient-controlled morphine allows him to exist in this state of in-between… giving us time to love and grieve and all the terrifyingly beautiful things most people would probably rather avoid.

It’s just shocking how much it hurts.






During the summer of 2000 I found myself on the island of Grand Cayman taking a two-week certification course for scuba diving. I was 30 years old and “highly” stressed out. Oh, my life was full of woe back then, for I had just completed my MBA at the University of Denver and had to leave my beloved Summit County, Colorado (where it is extremely difficult to earn a salary strong enough to pay off an MBA) for my former home of Central Ohio. Yes, I moved back home. With my parents. And as I stated above, I was 30.

To my credit, however, I picked up the adulting gig pretty quickly. Within a year I was an HR manager making a respectable salary, got a spouse, a baby, a reasonably priced starter home in the suburbs… all within a year. It certainly wasn’t the vision I had for myself when I was in Grand Cayman “recovering” from my life as a student in a ski town, but I was making it work. And despite never wanting to be anywhere near infants/toddlers/anything-that’s-sticky, I found motherhood to be quite compelling. I was completely captivated by these little nuggets of joy.

So what, Sarah? We’ve all heard this story before. We know you’re sad because you never thought you could love someone like you love your children and how cruel this life has been because you have to sit and watch them hurt knowing there’s not a thing you can do for either one of them. We know.

I know. I’m just making conversation because I think I’ve forgotten how to do it. I see people in public and words form in my brain but my mouth can’t process it so I say a word like “moop” and realize how ridiculous it sounds and burst into tears. At Safeway. Or the bank. Or in the kitchen. Anywhere, really. I never know when it’s going to come.

It feels like we were introduced to this hospice team a million years ago. It’s amazing how quickly they become a part of the family, like they’ve been around forever and know every intimate detail of your dirty life. But they aren’t there to expose it. They aren’t involved because they’re nosy. They aren’t in it for the juicy gossip. They’re in it because it’s the end of someone’s life and someone has to be there to do it with grace. That’s not me at this point. I’m not doing this with grace. I can’t fucking stand this. But I want to soak in every minute because that’s all there is.

That’s all there is.

And why I was remembering my unpaid sabbatical in Grand Cayman was because it taught me something vital: how to breathe. And, God, isn’t that trite… just breathe, dear Sarah, just breathe. But dammit if it doesn’t work. Breathing works. It keeps us alive. And for the times that our body is too overwhelmed to do it on its own, you die for a second and then remember why you’re here… to keep breathing another day. At least until you’re out of breath.

I learned underwater that when you find the perfect balance, as you inhale, you rise. When you exhale, you sink. Of course, this life is so out of balance there’s a lot of kicking and flailing about, but bringing your mind back to the breath will eventually bring you through. Move forward through the water. Inhale; rise. Exhale; sink. A pattern with momentum and that much control will have you flitting through life like a mermaid. If only I could find a pattern.

I’m quietly watching as my son’s breath runs out. And that is excruciating. Some days I don’t want to. Then I remember that this is my flipping journey and I’m not going to miss a moment of it. If I’m supposed to sit by my son’s side as he slips off this mortal coil, then I’m in 1000%. I will breathe through it. Just like I breathed through his birth, I will breathe through piece of the journey, too.

When the nurse on-call tells you it’s time to open the “comfort kit” you’ve stored in the refrigerator for when things take a turn for the worse, just breathe.

When they suggest buying very dark sheets so you won’t be shocked by the amount of blood loss, just breathe.

When he finally asks for a tiny bit of comfort and lays his head on your shoulder just like he did when he was a toddler, just breathe.

End of life is still a part of life, friends. And even though the breathing gets more difficult, we’re still alive.

Keep breathing.

Brain Dump

There’s a tremendous backlog of information taking up space in my brain – so many things I’ve wanted to write about but haven’t – so I’m calling this post “brain dump” and whatever comes out comes out.

2017 has been quite the roller coaster. January knew that our swing was weakest when it came to her curve ball, so here’s what she and her “sisters” (especially the “extra bitchy” sisters named June and October) threw at my son: 1) relapse #5, 2) more radiation/chemo/surgeries, 3) scary progression of disease despite treatment, 4) MORE radiation, 5) No Evidence of Disease!  YAHOO!! 6) two precious months of hearing nothing from cancer, 7) only to find out in October he’s facing relapse #6… and the cycle begins again.

Ben’s on a daily oral chemo. He isn’t losing his hair but he feels like crap pretty much all the time. We haven’t changed how we approach this beast, Ben is still in charge of choosing (or not choosing) the treatment plan. Unfortunately, at this stage of the game, there aren’t many choices. And the options that do exist are terribly unpalatable. Right now this daily chemo regimen is the best option available.

The biggest change we’ve made was pulling Maddy out of school. She’s working with the same home/hospital teacher as Ben, which is awesome because we love her. Anyway, the school year got off to a rocky start for Maddy. An incident occurred that shook her to the core. I will not share details out of respect for my beautifully brave daughter, but it was enough to generate some pretty intense anxiety. And then once we received news that Ben had relapsed again, we realized that sending her to school to dazedly shuffle through the halls wasn’t what she needed. She wanted to be with her brother, so that’s what she’s doing. Her friends have totally rallied around her in support, coming over on the weekends for sleepovers and the usual 13-year-old stuff. Her pals are amazing and I’m greatly indebted to them for bringing any amount of joy to her life.

I keep trying to write about bucket list right here but I’m struggling. So let’s say this: we’ve had some neat experiences over the past couple of months… we road-tripped to Yellowstone, we spent a week in the mountains, we’ve gone zip-lining, and segway-ing and done clue rooms… but I think Ben has decided that a big trip to Hawaii is out. I’m not sure when he shifted away from that, but he started thinking instead about a trip to Ireland. After some consideration, he ditched that idea, too. So, here’s what we’re doing: Ben does not have friends in the traditional sense. He doesn’t have sleepovers. He doesn’t go out with his pals. But he does play online with LOTS of kids his age all over the US. I didn’t realize he had this wonderful network of friends that he’s been playing video games with for years. They have become his closest compadres. Don’t worry, we are vetting each and every online persona to make sure they aren’t 56-year-old pervs still living in their parent’s basement. And then, once they pass the “background check,” we’ll figure out a way to get them all together for a heck of a party. I was completely humbled by his idea of wanting to meet the very people who have had his back all these years.

Dr. Macy reminded us that Ben reaching NED status again is unlikely, which she immediately followed up with “but he continuously surprises us.” My take-away from that is that there is still hope. For whatever reason, this is our life. I don’t understand it. Sometimes I hate it. Many days I’m confident that it’s going to kill me soon. In fact, a moment of me grabbing my left arm and grimacing in pain led Matt to ask if I was having a heart attack. My response was “I really hope so.” I don’t think I meant it, but it sure flowed from me like it was the winning question on Final Jeopardy. Regardless, the pain dissipated and I’m still here to fight another day.

For now, I’m taking my cues from plants living life above the tree line. If you’ve not traveled in the mountains, the “tree line” is defined as an imaginary boundary above which trees will not grow. This line in the Rocky Mountains is somewhere around 11,000 feet. Anything above that has no shelter. Just the blistering sun, threatening storms, avalanche danger, rugged terrain and the wind whipping, sometimes at a hundred miles an hour. It’s difficult to survive above the tree line. But what these beautifully tough, yet delicately fragile plants do is lower their center of gravity and hang the fuck on. They ground themselves. So, that’s what I’m doing, too.

I see you coming, storm. I hear your roar. And I know you’re coming for us, bent on destruction. I’m tired. I’m scared. But I’M STILL HERE! I may not be standing right this second because your adverse weather pattern over the last 14 years has beat us down every damn chance you get. But guess what, bitch?

You haven’t won yet.





Checking in…

It looks like I’m becoming a “blog once a quarter” type of person. Sometimes I feel guilty about that because I genuinely do want to keep everyone updated on Ben. But honestly? I’m tired. Plus, Ben and Madeline have both recently told me that I talk about Ben’s illness way too much. I guess I took that to heart and backed off quite a bit. I mean, I want to be an embarrassing mom in a fun way, not the “holy crap, here comes the lady who can’t shut up about her son’s terminal cancer.”

Since joining social media in 2009, I have fallen in love with learning about your lives. I felt comfortable communicating with anyone and everyone because writing was my preferred mode of corresponding. I didn’t have to sort through my social anxiety in order to interact, which was completely refreshing. And when Ben did relapse that summer of 2009, Facebook got me through the long days at the hospital. I could slip into your world for a couple of minutes… virtually celebrate milestones with you, applaud your kiddo for acing a test, enjoy your life as if I were right beside you… it was a form of sweet relief. Thank you for that. Plus, social media allowed me to cultivate a following of amazing supporters from around the world who have nothing but love for my Ben. So, while you might not want to STAY in our world, you could visit whenever you wanted to.

I’ve received a couple of messages lately from people checking in, worried about us. This is certainly not my intention to cause concern, but the truth is we’re kinda in neuroblastoma purgatory. Each doctor’s visit determines whether we get to hang out in NED heaven or if we’re being thrown back into treatment hell. Right now, nothing is going on. We have a lot of downtime. I wish I could say that we’re doing a lot of productive stuff with that time, but we’re not. Matt goes to work. Maddy goes to school. Ben sometimes works with his teacher. I generally get lost in the sub-world of Pinterest, but sometimes I try out self-tanners. And cry. Of course, I try not to do the self-tanning thing and cry in the same day.

I’ve learned that having something to look forward to takes some of the pressure off the landmines otherwise threatening our environment. For instance, Maddy recently turned 13. She wanted to have a murder mystery party so I myopically dove in… oblivious to everything else in my life. I viewed her birthday party as the pinnacle of my parenting… throw her a great party and I’ll win the “Best Mom EVER!!!” award. I really needed that kind of win. And while I’m confident that the party was a success (she gave it an 11 out of a score of 10,) now I’m back in that sea-ravaged boat asking “What now?” What if I get started on a new project and learn during next week’s scans that radiation didn’t do what we’ve hoped? And then that leads me to just sit here paralyzed… occasionally crying and pinning things on Pinterest that I’ll probably never make. I feel that continuing my search for the perfect self-tanner for my fair complexion is the safest activity for now.

I haven’t completely lost hope, but I’m also not turning a blind eye to what simply is. I know that after my last blog post there was concern that I sounded like I was throwing in the towel and conceding defeat to Ben’s opponent. I’ll admit that it is becoming more and more challenging to accept this bullshit that my son continues to bravely face. I try not to let those cracks show when I’m with him but he knows. He knows. The streaks in my self-tanner leaves no room for doubt.

Everything hinges on what this next set of scans report… I am hopeful.

But I am terrified. And the terror part is getting harder to suppress.



My brain wants to shut down and my body wants to give up. I can’t make them connect right now and despite trying to keep afloat with humor and a “we’ll beat it again!” attitude, I’m concerned that I’m running way too far past empty to keep up this charade.

For those of you who don’t know, Ben has relapsed again. SIX times my son has battled this insidious fucker. I sincerely don’t know how he keeps going. I truly don’t. He continues to be so brave and strong. And while I try to keep a brave face a lot of the time, well, I’m just out of energy. My emotions are completely exposed like raw nerve endings most of the time.

I noticed right before we left for NYC that Ben had turned a picture of himself around to face the wall. This picture showed his wonderful and insightful smile, those deep and knowing eyes, and a completely bald head. He looks that way more often than not but he had reached a point where he was tired of looking at that image. He admitted that he was the one who had turned it to face the wall because he didn’t like looking at himself when he looked like a cancer patient. I honored his request and took it down because I just don’t ever want him to feel unhappy. Besides, we were in the throes of an amazing winning streak against cancer. We felt the vaccine was working and was even scheduling an appointment on getting his port removed when we returned to Denver. THAT was an epic milestone! To not need his port any longer was thrilling to me… and to him. However, we all know now that port removal won’t be happening anytime soon.

This trip to NYC was a regularly scheduled visit. He needed injection #5 of the vaccine and a set of scans. My sister came in to NYC for the day, so we were sitting together on the plastic couch in the waiting room while Ben was undergoing his bone marrow biopsy. I usually stink at having people sit with me during procedures because I seem to be more comfortable in my own head. It’s no news that I’m an introvert and tend to want to handle things on my own, but having her there was really nice. So, when I heard Dr. Kushner talking about Ben Brewer, I turned to wave him over to us. After a brief introduction to my sister, he simply said it: “There’s a new spot.” As that information was trying to penetrate my brain, I worried about how I was getting ready to lose it in front of every person in that waiting room. I kept nodding my head and trying to listen, hoping I was catching what needed to be caught, but everything was buzzing. And I was sincerely worried that I was going to scream right there in the middle of that busy waiting room. After the news was delivered, we were able to go into an office where I did lose it.

Now, I’ve been doing this for a long freaking time. And maybe I should be used to hearing that my son’s cancer has returned. But let me make this very clear: I WILL NEVER BE OK WITH CANCER ATTACKING MY SON. Not the first time, and not the sixth time. And if there’s another time, I won’t like it then either. I understand that I’m “old hat” at this, but it never gets easier. NEVER. And I am offended by people who have said “Oh, it’s just one little spot” which, I shit you not, is what one of the nurses said to me.

Fuck that. ANY cancer attacking my son WILL NEVER BE OK.


So, they gave us a plan right away. And being the compliant person I am, I agreed. Of course, this was all done with Ben’s consent, but my thought was get that cancer out of there NOW. Surgery was scheduled for two days later and a whole extra shit-show of incompetence happened after that. I am not going to go into details here but let me say this: We have officially broken up with Memorial Sloan Kettering for treatment.

This makes me terribly sad. In 2010, Dr Kramer, who was heading up the relapsed neuroblastoma study at MSKCC said the following: “I believe your son is curable.” It was what I had been waiting to hear for years. And, for some idiotic reason, I believed her. I hung a lot of hope on those words. Now, seven years after that initial relapse and giving this institution chance after chance after chance to treat my son with some dignity, since he relapsed on their “Holy Grail” of therapy, there’s no need to continue. It just doesn’t make sense.

On our flight home, Ben leaned into me and said “We travel here to receive CARE. It seems pretty clear to me that they don’t care about me. I’m just a number to them.”

We got home on a Friday night. Ben was coughing quite a lot, which could have been his lung’s way of trying to get stronger post surgery, but since it persisted through the weekend I took him to Denver Children’s Monday morning. We met with Flori, his usual nurse practitioner and SHE HAD NO FUCKING IDEA THAT BEN HAD RELAPSED! She didn’t know that he had surgery over a week ago. She had no information. So I had to explain where it was found. I had to explain the procedures he had just had. I had to explain what the next steps were. I had to call MSKCC to get the records transferred. Of course, I was sobbing throughout the entire ordeal because WHY WOULDN’T THEY HAVE THE COMMON COURTESY TO LET HIS HOME HOSPITAL KNOW WHAT WAS GOING ON????

Dr. Macy came in to talk with us and was very frank. She asked why we would return to receive a therapy that didn’t work. And given all the stuff that went wrong during that visit, why would we want to keep taking on their inability to offer my son any quality of life.

And that’s what shocked me into understanding. They don’t expect him to have any quality of life. Ben said, “They’re probably just surprised that I’ve lived this long, so they just throw whatever they can at me to see if it works.”

Does Dr. Macy think the cancer will return again? Yes. She expects it to keep popping up here and there for the remainder of his life. And then she threw in the “whac-a-mole” comparison, meaning that whenever it does come back, we’ll hit it with whatever study is available. Keep beating it down whenever it shows its ugly head.

We’ve also learned that the radiation therapy they were planning in NYC was nothing like what the radiologist here in Denver would do. NYC was basically going to throw five big doses at him, where Denver said it would be safer to do a lower dose over 12-20 visits. Glad they forced us to get a second opinion.

I don’t know what’s going on there. And if they do eventually find the golden ticket that cures neuroblastoma for good, then Ben will be able to receive it. They can’t deny him treatment just because I’ve called them on their incompetence. But I have to say that I am highly distressed. It’s taken me almost two weeks to be able to say anything at all. I’m feeling very defeated for a variety of reasons.

I’m sad that this “lifeline” didn’t pan out and did more holding us under water than trying to keep us afloat. I  cannot say this has been everyone’s experience, and I’m sure there are plenty out there who are extremely satisfied with their experience at this institution.

Good for them.

But, for now, we’re going to navigate treatment here in Denver.

We’re home.

Despite all the hard work I’m doing on changing my perspective, there are days here and there where I just crumble like a delicate butter cookie under the weight of an 18-wheeler wearing snow chains. Yesterday was one of those days, so today I’m sporting what I’ve dubbed a “sad hangover.” I’m all achy and fuzzy brained, low on energy and carrying around an impending sense of doom like it’s a glorious fashion accessory.

I never did learn to accessorize properly.

Now, the new, “kick-ass” me would try to slough this off as soon as possible, turn on my inner light and inspire all of you out there to keep on trucking despite the circumstances. Today, however, I’m on slo-mo through a big bowl of coagulated oatmeal that someone left on the counter with the hope that somebody else will clean it up.

Ben noticed immediately that one of my Christmas bulbs was burned out, which was causing all the other bulbs to underachieve. I was sitting on the couch owning my sadness when Ben leaned over and gave me a big recharge on my batteries. He hugged me hard, looked deep into my eyes and started singing the chorus from a wonderful song from the Broadway musical “The Book of Mormon” called “Turn it Off.” Now, I’m going to post a link to a YouTube video of this snappy little tune, but I must insist that you only watch if you have a heightened sense of humor and appreciate making a complete mockery of difficult life events. Oh, what am I saying? Y’all read my blog… I think you’re on board with how I roll. If you choose not to watch the video (which is my official recommendation) basically all the song is saying is to bury any and all uncomfortable feelings and go on with your day. It goes against everything I’ve been so diligently working on, but him singing that song to me made me laugh. And that’s what I so desperately needed.

Warning: Highly inappropriate and completely offensive content follows. Enjoy.

And there’s freaking TAP DANCING! We all know how well I respond to tap dancing.

What’s got Sarah so blue and in need of “turning off” her emotions? Well, Ben had an appointment with the endocrinology department at Children’s yesterday. If you’re not familiar, or simply don’t remember basic biology, your endocrine system is made up of glands that produce and secrete hormones. These hormones regulate the body’s growth, metabolism, and sexual development. Now, I am well aware of what Ben’s doctors told me when he was first diagnosed in 2004… with the amount of therapy Ben will endure, he will most likely be sterile. He was two years old at the time, so I gently rolled up this tidbit of information and pushed it deep down into a box of things I don’t want to think about, and there it stayed until yesterday.

At age 15 1/2, Ben is 4’11” (or 59 inches) and weighs 72 pounds. Here’s a chart of what’s typical for boys:

Typical Height and Weight Charts
Age Range Height Weight
12-13 years 58 – 62 inches 85 – 100 lbs
14-15 years 63 – 66 inches 105 – 125 lbs
16-17 years 67 – 70 inches 130 – 150 lbs
18-20 years 68 – 70 inches 150 – 160 lbs

This is probably one of the hardest pieces for him to deal with. Well, discounting the multitude of friends dying from the same disease and battling a relentless bully every single day. People who don’t know him assume he’s about ten. For a 15 year old, that’s freaking humiliating. I mean, he’s SHAVING for crying out loud! He’s studying driver’s ed! I have hoped and prayed for the BEST for Ben and I can’t find any solace in the fact that YES, he is getting ready to learn how to drive but DAMMIT if he still doesn’t fall within the parameters of needing to be in a car seat! NOT FAIR! (it’s okay if you chuckled at this… just bringing levity to the whole scenario.) I mean, I didn’t need to wear a bra until college… generally, my people are late developers, but it doesn’t matter when you’re so acutely aware of your physicality. This age is tough for any kid, let alone a kid like Ben.

And here I am tap dancing circles around him trying to cheer him up after the hostess asks if he needs a kid’s menu. I mean, didn’t she see my desperate expression of “PLEASE don’t ask if we need a kid’s menu!” I’m not sure exactly what that expression looks like but I like to think it’s enough to get someone’s attention. Maybe I should practice in the mirror? Or maybe I should simply stop trying to shield him.

Because, here’s the thing: He can handle it. Yesterday, Ben finally learned that he is sterile from years of intensive therapy. His doc was talking about all the testing they were planning to do yesterday to check his bone age, thyroid levels, etc… fertility included. My brain started buzzing and I shot the doctor my “look” (that clearly needs work) of “PLEASE don’t tell him right now that he’s sterile.” She didn’t catch it. I put everything on hold and felt odd about asking Ben to step out of the room because we tell him EVERYTHING! He deserves to know! But for whatever reason, every cell in my body revolted against Ben knowing this bit of information. It hurt me. I don’t know why, but it hurt me. I didn’t want it to hurt him, too. Ben gave me a look filled with curiosity as he walked out of the room. I felt silly about my behavior but quickly went on to explain that he didn’t know about the whole infertility piece. I wasn’t ready to say it out loud.

The doctor consoled me and said that she was more than willing to guide us through that discussion with him. Well, it didn’t matter, because that kid was outside the door listening to the whole thing. Ben needs hearing aids, MY ASS!!

We talked about it on the way home. I cried. He didn’t. He absorbed it and will deal with it when he’s ready. While I was driving, he grabbed my hand and filled me in on all the wonderful things that he won’t have to deal with due to his being infertile; like he’ll never hear that he knocked up his high school sweetheart… he’ll never hear Maury Povich say “You ARE the Father!”… and he’ll never be a part of Mtv’s “16 and Pregnant” storyline.

And then, as we were laughing over his hilarious comments, my beautiful son said the following: “There are many ways to have a family, Mom. I’ll figure something else out.”

My God, do I love this boy. He continues to teach me every single day on how to deal with adversity.

I’m just sorry he’s an expert on it.



Love is the Answer

I know, it’s been a while. I decided to take some time off to work on myself. The beautiful thing is that it coincided with Neuroblastoma giving Ben a pretty big break so I’ve had some extra time.

As you may remember, I’ve been working on obtaining my yoga therapy certification. I started the final phase of this journey this past June and have been gently unfolding ever since. I guess it’s been my version of Elizabeth Gilbert’s bestseller, “Eat, Pray, Love: One Woman’s Search for Everything.” And while I haven’t found everything, I’ve certainly learned a lot about who I am. Earth shattering things. Well, at least they’re earth shattering to me.

I didn’t realize how terrified I was to simply be “seen.” I’ve always been one to hide. Hide from friends. Hide from family. Hide from daily life. The further I could sink into a background, the safer I felt. It wasn’t fun there, but at least I felt safe. It begged the question: Why is “safe” so important to me? The past thirteen years of my life has been fraught with unsafe things… the constant thought of potentially losing of my son, the uncertainty of love relationships, tremendous amounts of loss, feeling the distance between myself and people I hold dear in my heart… always blaming myself for being “weird” or “quirky” and expecting – no, demanding – for people to not take me very seriously. A sense of humor is much easier to deal with than feeling vulnerable and unsafe. And if I ever let any of that vulnerability seep out, I had to quickly cover it with something to make YOU more comfortable. Meanwhile, it did absolutely nothing for my mental health.

I craved a safety that I couldn’t even create with every defense mechanism that I had in my bag of tricks. So I decided to change course and take a look at perspective. Now, THAT was something I had control over. I could look at something from any point of view that I wanted – even the crappy stuff in my life. And I’m learning to continuously search out the good in every situation and discard what serves no reasonable purpose.

So, I’ve sat back and have watched what’s been happening over the last few months. There’s no lack of hate out there… this latest election showed the hideous side of many people, spewing anger about the horrors that will happen if either side won. It’s been exhausting.  I rarely share my political views because I don’t think of myself as being especially politically astute. And I’m really of the mindset that my vote doesn’t count. I DID vote, but I’m pretty sure my ballot is still sitting somewhere in Aurora unopened. I don’t have faith that the political system is on the same spiritual awakening journey that I’m currently navigating. It all feels so out of control and while I used “my voice” to vote, I’m not confident that anyone’s voice was truly heard. Honestly, though, it’s been so hard to hear anything at all over all this hatred. I’m very concerned about our future as a country, especially if we can’t even simply be kind to one another. I’m planning to use what voice I’m developing to spread love and kindness. Any other way just doesn’t make sense. And any other way just doesn’t seem to matter.

The biggest “a-ha” piece that I’ve learned so far has been the fact that I am not defined by anyone else’s thoughts. YOU are defined by your thoughts, but I am only defined by mine. And you are not defined by my thoughts, either! Isn’t that refreshing? For whatever reason, that brought a tremendous amount of comfort to me. It might be that this is a super basic way to look at life, but it makes a lot of sense to me. And I’m choosing to look at it all through a lens of love. Because of this, I feel that my relationships are becoming stronger because I feel stronger. And, I am not constantly worrying about what you think of me. Think what you will. You’re going to anyway!

But know that whoever you are, from my perspective, I think you’re amazing. Despite your faults. Despite what you think of me. Offer the light you have instead of the fear that so often pushes through first.

Love is the answer.


Down Dog

You might have heard that our beloved Yoshi – a completely adorable, yet ridiculously unintelligent dog – died this past April after a run-in with some raspberry flavored IceBreakers sugar-free gum. I had no idea that the Xylitol featured in this sort of gum was toxic to dogs and would most likely result in liver failure – and such is the demise that sweet Yoshi met after eating an entire container of the stuff. It broke my heart to hold my sweet doggy in my arms as he peacefully drifted off to his Rainbow Bridge or Valhalla or wherever less-intelligent dogs may go when their earthly life ends. And I thought to myself that I would never be ready for another dog. Ever. He was just that awesome.

So, three weeks later as we were walking into PetCo to get food for the other members of the pet squad, we had to pass by a long line of cages holding adorable foster puppies looking for their forever home. I lowered my gaze so I wouldn’t have to make eye contact with their big brown puppy eyes, knowing that some other sucker would come along shortly to offer them a loving environment. As I was putting my hand up to the side of my face to act as a blinder to save me from their terminal cuteness, I heard someone call out my name. It was my wonderful yoga friend, Becky, and damn if she wasn’t holding one of these adorable puppies. She had been fostering puppies for an out-of-state rescue group and was very effective at her job. She twisted my arm and MADE me hold a puppy.

I want the record to show that it was completely against my will.


Needless to say, an hour later, we had a new dog. Ben decided on the name “Cody,” after our favorite NHL player, Cody McLeod. Puppy Cody is sooooo cute and has a shocking number of similarities to our dearly departed Yoshi, including his lack of intelligence.

Spring morphed into summer. Cody worked diligently on things like finding corners to pee in, torturing his chihuahua companion who wanted absolutely nothing to do with him, and taking over Yoshi’s former pastime of trying to mount the cats – cats that were still in possession of their claws. Despite their attempts to dig his eyes out, Cody never quite got the hint. He proudly displayed his lack of intelligence, just like Yoshi did.

So when it came time for me to pick the kids up from Camp Wapiyapi, ( – look it up, it’s AMAZING!) my heart sunk a little because it was tradition for me to take Yoshi along for the ride. He LOVED car rides, especially when it resulted in reuniting with his favorite Ben and Madeline after a week’s absence. The camp the kiddos go to is in Estes Park, about two hours from Denver. I quickly remembered that we had a new puppy who would probably LOVE to take a car ride with me! I loaded him up in the front seat with a blanket to sit on and off we went.

About 10 miles into the trip, I got on the interstate. Up until that time, Cody had been content sitting shotgun, but once we hit the highway, it became a different story. I’m not sure if he was freaked out by the sound of the road or what, but he started whining. I tried to soothe him with loving scratches behind the ears and lulling him with my lowered voice with words like “it’s ok, puppy. Just relax, Cody.” but he wasn’t having it. He crawled up between the headrest and my neck, desperately searching for safety. He sat there for a couple of minutes, incessantly making the most pitiful noise I’ve ever heard.

And that’s when the drooling started.

Within moments, the back of my neck, my shoulder and arm were covered with puppy drool. For those of you who know me, you know I can handle blood. I can even handle poop. But the one reason I could absolutely positively NEVER EVER be a nurse is because I. cannot. handle. vomit/bile/drool. And I have a very sensitive gag reflex when it comes to such things. So, as I looked like a cat trying desperately to dislodge a hairball from my throat with a dog stuck behind my neck drooling all over me, I knew it was time to pull over. I moved Cody back to his blanket. I regained composure and considered turning around to take Cody back home, but knew that would be too time consuming. I had to pick up the kids by a certain time, turning back now would make me incredibly late.

We got back on the road. The whining picked up where he had left off and the drooling increased. I patted the top of his head, trying to soothe him but also trying like crazy to avoid the drool. It went on like that for miles. He would lift his cute little puppy head off the blanket only to leave a disgusting line of drool hanging from his mouth. It was repugnant. Shuddering with disgust and trying hard to not puke, I pulled off the highway and onto the mountain road that leads to the camp. For a few moments, Cody relaxed. He stopped whining. I thought that it was, indeed, the noise of the interstate that had him so worked up. Whew. Safe at last.

As I was mentally mapping out a route home that would avoid all highways, I had to veer into the oncoming lane to avoid a bicyclist. I’m all for exercising but I believe the act of bicycling up a mountain road at seven in the morning is a bit show-off-y. Of course, as I passed the mid-line of the road, the rumble strips meant to alert you as you’re steering off course scared the ever-loving hooey out of Cody. He howled as we crossed over the line, again and again, as the amount of crazy bicyclists increased as we traveled further into the mountains.

I apologized repeatedly as we passed yet another bicyclist. And another. And another… “I’m sorry, I’m sorry puppy, I’m so sorry,” I placated as he continued to howl and drool each time we passed over the rumble strip. He constantly changed positions. At one point, he was upside down with his head hanging backwards over the seat. It reminded me of this one time in college – after experiencing what one bar called “bucket night” – the evil effects that alcohol could have on a fresh-faced kid like me. Maybe if I lay down with one leg up in the air, I won’t feel nauseous? Or if I hold on to the chair rail, the room won’t spin as fast? Please, baby Jesus, please let this pass. I will never drink again. Ever. I imagined this was what Cody was doing as he continued to drool and howl at the inhumanity of it all.

After two hours of his howling and drooling, we arrived at the beautiful location nestled in the mountains. Cody leapt out of the vehicle and ran towards the first person he saw, probably thinking that someone would save him from the insanity he just endured. The moment the kids at camp saw him, the Oooohs and Aaaaahs started… “Ohhhh! what a cute puppy,” and “Can I pet him?” until he got near them and they discovered that he was soaked from all the drool. The ooohs and aaaahs quickly turned to ew, gross, as a completely gooey dog tried desperately to jump into someone else’s arms.

We said our goodbyes and loaded back into the vehicle, Ben and Mad snuggled Cody between them on a new, less drooly, blanket. I think he passed out from the stress of it all since he didn’t make a peep the entire way home.

And he hasn’t been on a road trip since. I don’t think he ever will again.

Moral of the story: Don’t be a showoff and ride your bike in the mountains. Just kidding. However, do make sure your dog can handle the car before taking him for a four hour ride. I’m sure my car will never recover from all the drool. And neither will I.




For my Sister

My dear, darling Sister,

Today is going to be very difficult. Attending Anthony’s graduation without his being there has to be another knife in your weary heart. I’m sorry I’m not there to celebrate his achievement and hold your hand as this milestone he worked so hard for passes you by without him in attendance.

I’m so sorry. I’m trying really hard to find the words but I’m struggling. I always have words. Something to make you laugh, something to bring a bit of levity. Comfort. Anything to take the sting of this immeasurable pain away. Words have always been my friends, but not now. I have nothing that will make this better. The loss of your sweet, tender-hearted son is something that leaves me utterly speechless.

I’ve started several different posts about Anthony since he left us in April. I want the world to know how special he was. I want them all to know about the comfort he brought to my son during so many years of ridiculous therapy. How many times has your family dropped everything to come to our side when Ben was ailing? Countless. Your thoughts and prayers and support have been a beacon for me over the past 12 years of Ben’s illness. Anthony was one of Ben’s very best friends. We all know that Ben is pretty good at being alone, but the relationship that he and Anthony shared was… magical. 

You raised a good boy, Sissy. You did a good job. You loved him, cared for him, supported him, encouraged him… all the things a loving parent should do. I know he didn’t doubt that. What he did doubt was himself. And that’s something you did not have the power to change. When someone has in their mind that they aren’t worth it, it’s hard to turn that around. It’s something that needs to be learned on their own. Unfortunately, he didn’t give himself enough time.

When I was Anthony’s age, I could only hear the negative. Words came into my brain and filtered through my crappy self-image, unable to refine into anything fortifying. While I’ve learned a lot over my 47 years and have decided that I’m ultimately not worthless, it was a very difficult battle. Some of us are just wired that way. It’s not anything any amount of parenting or therapy can change. It has to be done from within. I recognized some of the same traits in Anthony, and even addressed them in a letter I wrote him two years ago for his sixteenth birthday. We were a lot alike in many ways, using our humor to cover up how bad we were hurting, retreating when things got too tough, beating ourselves up for every damn thing, whether we had anything to do with it or not. We had the same affliction of simply feeling too much and not knowing how to handle it.


I don’t know everything, Sissy, but I know this: You were the perfect parent to suit his needs. You did your job well. Knowing that you always wanted to be a mom, there was no question that you’d excel at your job. Gabriella and Anthony were blessed to have you as their mother. You provided them with the best and most important thing a mother could give – your heart. They never lost sight of that.

I also happen to know a thing or two about low self-worth and how damaging overwhelming depression can be. It doesn’t matter what anyone says, if you don’t believe it, you won’t hear it. Anthony was such an empathetic young man and picked up on everyone’s emotions. His first thought after meeting someone was, “I wonder if they liked me?” Because he’s painfully aware of people’s thoughts and feelings, even to eventually go to the extreme of forsaking his own thoughts and feelings in order to honor someone he cared about more than his own. Anthony didn’t understand his value. He didn’t give himself enough time to realize how precious he was. I’m so sorry for that.

I can’t imagine what you wake up to each morning and the heaviness you fall fitfully asleep with at night. I’ve tried to imagine it. I sincerely have. I’ve been preparing myself for my son’s death for 12 bleeping years. I know you can’t really prepare for something like that, but every day I think about the possibility of losing Ben. And how heart wrenching that would be. And how I wouldn’t want to go on. And that waking up to face another day without him would be the worst chore I could ever complete.

I guess what I’m trying to do here is bring you a tiny bit of comfort that you are an amazing mother. Your son is and will always be important to us. He added a lot to our lives, especially Benjamin’s life. I’m sad that many people didn’t get to know how wonderful he was and how dearly he will be missed.

And when they call his name at graduation today, smile knowing how happy he’d be to have completed this milestone. Celebrate it. Grieve it. Allow yourself to feel today, whatever those feelings might be. And know I’m here for you… to laugh with, to cry with, to celebrate and mourn with… I’m your girl.

I love you deeply. Always have, always will.