Summer Son

There’s an element of every season that I love, but if I had to choose, summer is probably my least favorite. I’m very sensitive to heat and while I love being ON the water (preferably in a small craft like a sailboat or a canoe) I don’t love the beach. I’ll take a snowy mountain peak any day.

And since I was born during the summer, I never got to have a birthday party in my classroom. This always irked me. When I found out that I was pregnant with Ben and had a due date of late June, the lack of a birthday party during the school year was one of the first things that crossed my mind. Priorities, I guess. I just wanted my unborn child to have a better life than I’d had. A birthday party during the school year is a child’s basic right. Ask any summer baby. They’ll all agree.

The impending onset of this summer has had me in a jumble of nerves. In my daily meditations, I tried to explore why I was so anxious about this coming summer, other than the basic disdain for sunburns and heat strokes. With Ben’s quarterly scans usually hitting around the start of each season, I came to the realization that every single relapse he’s had has occurred during the summer months. He had emergency surgery on my 41st birthday, which resulted in his first relapse. His second relapse was right after his 12th birthday. And then his third relapse was just a year later, on July 4th, 2014. Three recent summers overshadowed by recurrent disease. I guess if I had to find a silver lining in all of that, at least we were in an air-conditioned facility for the hell he faced.

So, when these most recent scans rolled around last week, I was beside myself with anxiety. His treatment team has said “it’s not a matter of ‘if’ it comes back, it’s a matter of ‘when.'” Now, I take all of this with a grain of salt. Statistically speaking, Ben is a freaking miracle. I’ve learned (and have had to relearn time and again) to surrender to the information we’ve been given. There’s nothing I can do about it except for love my Ben with all I’ve got. I try hard to not worry all the time and I’ve been doing a pretty good job. But like any human being suffering from PTSD, triggers make those raw emotions rear their ugly head.

We’ve been through hell. The last thing we want is to go through it again and it’s unfortunate that we’ve been told the whole “when, not if” factoid. I desperately want to know everything that’s happening inside my son’s body, so I long for the scans, yet dread them at the same time, because they have the potential to break my heart all over again.

When we got the word last week that Ben had no evidence of disease, I cried in relief. And then I threw up. Twice. I had been walking around with all of this heaviness, setting myself up for the possibility of another relapse, and when it didn’t come, my adrenaline had nothing to do. I’m not complaining, just explaining the whole barfy thing.

Finally. We get to have a summer.

We’re going to enjoy every sunburn. Every heat stroke. Find lots of adventures, like going to the Sand Dunes. Perhaps take that vacation that Ben’s been aching to take? Ben will have his 14th birthday outside of the hospital (see his Facebook page “I love The Bean” for birthday details… all are welcome!) And Thursday, Ben and Mad are headed to Wapiyapi, the most amazing summer camp catering to our precious population.

And I’m going to simply breathe. It’s going to be a good summer, indeed.

 

 

Little Lambs

When I was a kid, I loved visiting old cemeteries and making grave marker rubbings using a brown piece of craft paper and an old crayon. I’m not sure why I’ve always been intrigued by visiting people who’ve passed from this realm, but I simply love the peaceful feel of an old cemetery. The headstones were so creative and ornate. And I especially loved that they marked the exact amount of time spent on this earth. If I were to die today, my stone would state:  Sarah H. Washburn, Aged 46 y, 10 m, 6 d.

Sometimes it would even specify how you died. Mine might state: Killed while interfering with a piece of scum berating her child during therapy (No kidding, this actually happened. Not the death part, but the scum/berating part. Gross.)

Regardless, I adore the fact that those old stones let people know exactly how long people existed in their earthly form. Nowadays, most stones make you do the math for yourself. Of that, I am not a fan. Math has never been my thing.

Anyway, the recent weird weather in Colorado thwarted our planned monthly adventure, so May’s trip was a repeat to Idaho Springs for a soak in the Indian Hot Springs. It was rainy, which is why our original plan was scrapped. Personally, I love a car trip in the rain as long as it’s not a torrential downpour, and with the kids distracted in the backseat with their electronic devices, they didn’t mind.

After our soak at the springs, we drove up near the entrance of Mt. Evans. It’s a lonely stretch of road – and absolutely gorgeous in the fall with all the golden aspens – but on this rainy day there wasn’t much to see. We pulled over at an old cemetery on the side of the road, intrigued as usual. The grounds were unkempt and the drive around the loop was nearly impassable as thoughts of bottoming out my car became a concern, but some of the markers were phenomenal. One was shaped like a log cabin. Another was still immaculately cared for despite their beloved being gone for well over 100 years. But as I looked around there were a tremendous amount of markers with little lambs on top: the traditional marker for a child.

As I stated earlier, the cause of death was sometimes mentioned: Typhoid fever. Diptheria. Cholera Infantum. Tuberculosis. A variety of Pox. Many of these tiny markers listed horrific diseases, many of which are now nearly extinct. Well, except the anti-vaxx community, who may be bringing them all back. Sorry. I think not vaccinating is a poor choice. Why on earth invite that sort of illness back into our world when it’s so preventable? If there was a surefire way to beat cancer, I’d be all over that in a heartbeat.

Don’t get me wrong, I can fully understand people wanting to stop giving their child something that might cause another challenging affliction – like autism – but is the risk of having your child die better? I mean, Ben goes through a tremendous amount of therapy that very well may end up killing him. It’s no secret that this very thing has happened to many other children we’ve known, dying from complications of therapy, and that totally sucks. But I know we’re helping to pave the way to a FUTURE for other children like him. I hate that he’s been a guinea pig of sorts, but what are our options? Plus, he’s still here. Despite his hearing loss. Despite his severely curved spine. Despite his “chemo brain” or lack of focus. Despite missing adult teeth and a shriveled kidney and short stature and a multitude of scars and all the pain he’s endured and the gazillions of treatments he’s had over the years. But if we found a cure for this, and people chose to turn their back on it because their child might have some developmental disabilities because of it? Well, that makes no sense to me. Honestly, I would be offended. My son’s life matters. He goes through what he does in hopes of not only saving his life, but to make others like him not have to fight so hard. He’s a true soldier in this fight against cancer.

I’m committed to his life. I want his years, months and days to amount to something. And it is. It has been. When we think his quality of years, months and days are wavering, then we might think otherwise. But I feel that’s a long time away. I know it is.

Children dying is nothing new. In fact, it was common to lose a child back before all the medical advances became readily available. And I know that if Ben were to have been afflicted with what he has today back at the turn of the century, he wouldn’t have lived for very long. Then again, I probably wouldn’t be here myself because of my own health ailments.

I didn’t mean for this to be an attack on anti-vaxxers, it just got me thinking about how fragile life is and how we should applaud what’s available to us, even when it’s not perfect. Every day of our lives matter.

Every single day.

Love Notes

I hate going to the mailbox because there’s a lot of icky things waiting for me in there… overdue bills, endless yellow papers from Medicaid regarding Ben’s therapy, an occasional rattlesnake…. Just kidding on that one. I have led myself to believe that there is one living in there, though, and opening the box will only encourage him to strike. It’s just safer to not go. That’s what I tell the bill collectors, anyway.

But there’s the occasional card or note from a friend offering encouragement. I treasure these. I have a box where I keep these lovely things, and when I’m down I’ll retreat to the box to get a little love. I also have a few miniature Almond Joy’s in there to cheer me up, too. The very bottom of the box holds love notes from former suitors. I haven’t added any to my collection recently, but the ones I have were totally worth saving. The best are from a secret admirer I had when I lived in Summit County. I never found out who it was, but I secretly loved walking out to my car after work to find one tucked under my windshield wiper. This was during a kinder time, when stalking really wasn’t “a thing” and glorified on shows like “Snapped.”

Anyway, I was talking to a dear friend recently, telling her that I was headed to my “box” to dig up a love note. After explaining the concept of my special box to her, she confided that she had never received a love note. Never. EVER!

I was aghast and completely pissed off! She is one of the loveliest people I’ve ever known. Luckily for me, I’ve known her since I was six years old. And while this note isn’t of the romantic nature, I want her to know PUBLICLY that she is loved dearly by yours truly, and I can’t imagine my life without her.

Her name is Ree. I met her while I was in the first grade. I was new to the school but we became fast friends during the monthly meetings of Girl Scout Troop #315. Her mom, Jane, was one of our leaders. Talk about a riot! My mother, who wasn’t really into group activities, volunteered to drive on many of our outings. I’m pretty sure it wasn’t to spend time with a bunch of obnoxious pre-pubescent girls, but the camaraderie she found with Jane and a couple of the other moms. And, apparently, there was a lot of sneaky cigarette smoking going on after the campfire died down and we were safely tucked in our tents. It was the 70’s, so this smoking stuff was an acceptable pastime for this particular decade.

Anyway, Ree was one of my core peeps. Slumber parties, school activities, we even went to the same university. We fell out of touch for a while over the years, but fortunately, Facebook saved the day. Ever since our FB reunion, she has been a steadfast supporter during Benjamin’s therapy and often contacts me just to check in. She loves me.

And I love her. Her heart is so pure. She’s extremely trusting so we’ve both lamented on our poor choices when it comes to boys. But to know that she’s never received a love letter, well it just makes me wonder what the young men are about these days? Do they not realize when they hold a blossom in their hand? Do they not see the untainted love that could be unconditionally theirs? Or are they just too caught up to see the treasure before them? Dumb asses. There’s no other descriptor for it. The fact that she hasn’t received one isn’t from her lack of beauty or sincerity or any matter of loveliness – she abundantly embodies all of these traits. She just hasn’t met any good writers.

So, since I do okay with writing from time to time, I wanted to take this moment to let her know that I love her with my entire heart. You have the adoration of my children. In fact, Ben just asked me what I was writing about and I said “my dear friend, Ree.” He said, “I love her.”

He loves you. Maddy loves you. I love you. And I know so many who love you, too. You’re a lovely woman, beautiful mother, and caring friend. Thank you for that.

You deserve all the love in the world.

 

Closed for Restoration

I have a TON to update about Ben but I absolutely have to get the following off my chest:

Two summers ago I decided – on a whim – that I would attempt to climb Mt. Bierstadt. It’s one of Colorado’s many peaks that soar over 14,000 feet and it’s widely reported that Bierstadt is the easiest to hike. I had the entire day to myself but I didn’t really plan very well, which is why I ultimately didn’t summit (not enough water and not enough layers of clothes) but what I did accomplish was wonderful.

On my journey, I saw a small trail that veered off the beaten path. It looked peaceful and serene but had a sign that stated “Closed for Restoration.” The simple wood sign with a beautifully brief message struck me immediately. I liked it so much that I took a picture of it and sent it to my then boyfriend, mentioning that I wanted to use it for something someday – a short story, perhaps – and filed it away. I’d forgotten about it until my computer crashed last week and all my pictures were lost. Gah!

Luckily, my ex-husband helped me restore all the photos and I have this lovely picture to remind me that it’s okay to close down to repair and restore. I also got a host of other pictures I’d never seen before. More on that in a bit.

I’ve been on a path of rediscovery lately. Part of it has been my yoga teacher training journey, which has been simply marvelous. I’ve met a beautiful group of new friends who are nurturing and supportive. It was clearly one of the best decisions I’ve ever made. I started the journey with the hopes of wanting to use my training to help other people, which I still plan to do, but I just didn’t understand how much it would help me in my own journey: mind, body and soul.

Over the years of writing this blog, I’ve expressed openly the obstacles I’ve faced in my life, from watching in helpless horror as my grandfather tried to kill my grandmother when I was five years old, to my son’s horrific and lengthy battle with cancer. And there’s been a wide gamut of other nonsense in between. When it comes right down to it, though, I’m pretty freaking tough.

But there’s always been a part of me that guards my tender heart. I’ve had plenty of boyfriends (and too many husbands) but never connected like I did with the boyfriend I sent the “Closed for Restoration” photo to. Honestly? I believed he was my twin flame. I felt safe. Secure. Our situation wasn’t ideal, for sure, but the love I felt on my end was undeniably special. I shared every.single.thing with this individual without hesitation. We broke up quite a while ago (with the stipulation that I wasn’t allowed to write about him for 90 days, which is hilarious to me) and I did okay with moving forward over the past year or so. I’ve dated some. I’ve worked on my own issues of low self-worth, blah, blah, blah… But there were times that I missed him. A lot.

I learned quickly after our break up that he wasn’t the source of strength I thought him to be. But I missed the friendship. I missed bouncing ideas off of him. I missed the passion I seemed to feel when it came to him. And when my computer crashed and all my pictures were lost, it was a fortunate break for me to find what he’d been hiding. The computer that crashed had been a present from him. When I asked my ex-husband to help me restore the thousands of photos I had lost, I got a big surprise. There were loads of secret photos and text messages that he had been sending to other girls during critical times that he was with me, i.e. my mother’s death and Ben’s grueling therapy.

Gross.

At first, I took it personally. I wondered what was wrong with me that he would do this to “the love of his life.” But then I stopped myself (after a consult with my yoga group) and realized that these weren’t my flaws. Sure, I got a little karmic kickback for having an affair, but this behavior was on him.

All of my prayerful and meditative moments, besides asking for my son and daughter to be healthy and happy, have revolved around not looking for outside validation to make myself feel better. I don’t need anyone’s approval but have always sought it, often to my detriment. I learned a valuable lesson when those photos surfaced. I take full responsibility for what I did, but I can’t fault myself for his actions. I gave him my best. And it simply didn’t matter to him.

It was an enlightening moment. But the beauty of it – for me – was that I didn’t beat myself up for it. Okay, I didn’t beat myself up for long. I processed it and finally gave myself permission to erase it. All he gave me wasn’t real. He played into my love of Halloween by showing up in the costume that he thought I’d respond to. Balancing the tricks and treats kept me distracted to the point where he could venture out and do this to other women. MANY other women.

Gross.

So, does that mean I’ll close down permanently for restoration? No way. But the newly-found love I have for myself and the existing love I have for my children requires that only someone pretty freaking wonderful is allowed into my life. That goes for family, friends, and potential boyfriends.

As long as they pass a background check and aren’t on “pig-busters.com.”

 

 

four years later…

Dear Mom,

It’s been four years since we surrounded your hospital bed and allowed them to turn off the machines that were keeping you here with us. You had made it very clear that you were ready to leave this earth to go on to your next adventure. I hope you felt us holding your hands before you made your journey, I was trying to send you off with as much love as possible.

While it was difficult for all of us to let you go, I sure hope you’re having a great time in your garden filled with the eternal blooms of spring. I bet with four years under your belt, that garden is really coming into its own. You always had an eye for the future when it came to your garden, so I’m sure it’s a sight to behold. I like to think that you’ve got many cats milling about, curling up with you while you take a nap in the conservatory on the monkey couch I adored so much.

There’s so much to tell you. Ben keeps fighting that insidious disease but is doing well right now. We’re getting ready to travel again for his therapy. He’s doing his best to keep up with school, is quite the little skier, and is still just as serious as when he was born. He’s such a sweet and loving boy, Mom.

As for Madeline, well, you were right about her. She’s destined to be a star on stage and/or screen! She has a beautiful singing voice – just like Aunt Sissy – we just have to work on her shyness. She’ll blossom in her confidence when she’s a bit older, just like you did. Just like I did.

I’m hanging in there, too. The chaos keeps me busy but it’s a life I’m proud to be living. For never wanting to ever have children, I have found that being a mother is what I was meant to do in this life. It’s hard to see myself as an adult when I think about you. I just see a little freckle-faced girl hiding behind your skirt. But here I am, 46 years old, and there are still times that I want your comfort. I doubt that will ever change.

I still want to pick up the phone when something good happens. Or when something bad happens. Or when my sarcasm goes into overdrive and there’s nobody else who would enjoy it like you would. I know there were times that we butted heads more than anything else, but you know it’s because I’m just like you in so many ways. Our tender hearts wounded all too easily.

I do miss you, Mom. The kids miss you, too. Especially Madeline. Her connection to you was probably the most important of her young life. Nothing will ever replace you. For all of us.

But I hope you’re not missing us at all. However, if you want to, I wouldn’t mind a message telling me what you always said: “I love you one million and twelve.”

All my love,

Sarah

 

Special place in heaven

“It is with a heavy heart…” “Fly high…” “RIP…” “Gained their angel wings….”

Too many posts have stated things like this lately. So many children have died recently, most of the ones I follow have died from f*cking Neuroblastoma. Sorry (kinda) for the swear. I know I have a lot of anti-swearers who follow this blog. Let me thank you now for your continued support despite my affinity for blue streaks.

Man. At the risk of offending many folks, I’m going to make a confession. I absolutely despise the term that these children gain their “angel wings” or that they will now “RIP” or “fly high.” I’m not sure if it’s because of the heartbreak I feel when another child dies from cancer (or dies period) or I’m just angry in general. I also hate when people say that “they didn’t lose their battle with cancer, they won their battle!” That makes NO sense to me. Are you saying that they won because they get to go to heaven? And if this is the case, why do we even try to save anyone at all? If heaven is the amazing reward we receive, then why is there medicine to try to keep us here at all? Upon diagnosis, shouldn’t we be saying “Hooray! I get to go be with Jesus soon!” and just give up?

Are we that selfish?

I am. I’ll admit it. I want my son to stay here with me. Sure, there are those who believe he’s simply “on loan” from God or whatever, but if this is so, why do we try to save anyone? Why are there doctors and nurses and money spent on research? There’s a major disconnect for me.

All I know is that I want to prolong Ben’s time on earth – with me – for as long as I can. I insist on living like my heaven is NOW. My heaven is here on earth. My son and my daughter and my stupid pets – including my runaway hamster – make up my heaven. I’m not waiting for the white light. I have it now. And anyone who wishes away their time here on earth waiting for Jesus to take them home is missing out on the gift that He’s given us right now. Yes, heaven is for real, because it’s right in front of our stupid faces. Despite the piling up of bills. Despite the dirty laundry. Despite the harshness of life. Why would it exist if we weren’t meant to get something wonderful out of it?

If my son dies based on neuroblastoma or a complication of neuroblastoma, he will have lost his battle with this insidious disease. It doesn’t make sense to me to let this beast off the hook. Some people survive it, but many don’t. Why try to make cancer’s statistics look less threatening? It’s a beast. There is NOT a special place in heaven for cancer.

And this is another phrase that confounds me. Special places in heaven/hell. In reading comments on a post of a recently deceased child, I came across “There’s a special place in Heaven for your child.” Honestly, I sure hope so. When I think of a special place in heaven for one of our dearly departed friends, I think that he’s surrounded with millions of Legos and a stage for him to dance on. But I would think there’s a real estate issue with this heaven place if we’re all meant to have our own special place. Maybe some of us will only get a standard room with no ocean view? Maybe some of us will have to have a work-study job because we just didn’t learn all we were supposed to? I mean, there has to be housekeeping in heaven, right? Maybe people who have a special place in hell are able to do some work release and get bused to Heaven to clean up after all of those donning angel wings. I would think those big wings would hog up a lot of space that could be better used for either more folks or more dance space.

Apparently, I’m not going to Heaven. At least, that’s what I’ve heard from others. So, I’m forced to think about all of the intricacies of what either platform holds. I might have a deluxe suite in hell because I’m so good at being bad. Or, I’ll have a closet in heaven because I just wasn’t good enough. Maybe I’ll qualify for the exchange program if I can find a host family that will let me run all their heavenly errands for them? I can’t imagine what those errands might be. Getting their lyre tuned? Feather replacement for wings? Does heaven employ yoga teachers? Probably not. But I have to wonder who does the menial heaven stuff? I mean, they have wi-fi, right? There’s got to be someone who takes care of that kind of stuff.

Yes, this is what my brain does in an effort to process so much grief. But I don’t see anything fabulous about cancer killing children. And I will spend the rest of my life – until I take up residence in my deluxe suite in hell shoveling Satan’s sh*t – trying to shovel the sh*t that cancer doles out to these precious children.

And as for my precious child who is battling a very real demon hell bent on taking him away from me, his special place is in my arms. Loving him. Supporting him. Encouraging him to keep fighting.

And finding heaven in the midst of our very real hell.

What is love?

My first husband and I were the best of friends. Most of our dates consisted of exploring the mountain community we lived in and going on long road trips. We stayed up late into the night talking and laughing. We had so much fun together. Being a non-romantic person in general, I was stunned that I had finally allowed myself to fall in love. We got engaged quickly (the most romantic and thoughtful of all of my many marriage proposals) and made plans to marry in Hawaii. However, just days before we were due to get married, he confessed that his family didn’t support his marrying me, and we broke up.

I wandered around aimlessly for a couple of months before trying to get my heart back into caring that I still had a life without him. My heart felt completely obliterated. When he called to apologize and ask me to come back, some of those broken pieces fused back together, and I accepted.

It was never the same, though. We did eventually marry, but nobody was happy about it. His parents were pissed. My parents thought I was an idiot to want him back. But we all smiled for the pictures that have long since been put into boxes or discarded – a very brief period of history that is only rarely spoken of.

I choose so poorly when it comes to men. When I met my first husband, I really thought it was all changing because of that stupid word: love. I loved him with my entire heart. I was willing to overlook things that should have set off significant alarms. But I was going on the fact that we had fun together. We enjoyed each other. Why everyone else insisted on talking us out of that is beyond me. I’m pretty confident that he did love me. He just loved his parent’s opinion and acceptance more.

What I have habitually overlooked, however, is that love needs to begin from within. I was never very good at that. I know I have loads of people who love me, and Ben and Madeline have taught me a tremendous amount about love. And my heart is full of love for those close to me. I LOVE to love. Actually, I’m quite good at that sort of love. But romantic love just kinda pisses me off a whole real lot. And the loving of oneself can be – at times – nearly impossible. At least it can be for me.

So, mostly everyone knows that I’m addicted to movies. I generally like slasher films and ridiculous comedies… that seems to cover all the bases I care about. If you can’t laugh at it, then you should kill it and chop it into tiny pieces. But for the past year of my life, I’ve been obsessed with the movie “Private Benjamin.” I’ve always LOVED this movie, but lately it has been speaking directly to me. If you haven’t seen it, you must. It’s about a woman, Judy Benjamin, who is a total princess. All she wanted in life was a nice house with lots of clothes, a live-in maid, and a professional husband. All of her dreams came true but only for about six hours when her husband had a heart attack and died on their wedding night. Her response to this devastation was to join the army. It was disastrous. But she learned along the way that her own ability was all that she needed to get by. The movie is a true riot. But my favorite scene was the very last one, where she walks away from the very situation she had always longed for, because she was no longer willing to compromise herself. The credits roll as she walks alone down a long driveway in her wedding dress to an unknown ending. And we’re all cheering! We’re proud of her for not giving in. She stayed true to who she was despite not knowing what comes next.

And I love that. It’s what I’ve decided to do. For the first time, I’m making decisions based on what I want for my life. Yes, there are outlying factors that I can’t control (namely cancer) but for what I can control, I’m finally getting a grip.

In about three months, I will be certified to teach yoga. And with that new skill I am going to help other parents with critically ill children come up with a way to alleviate their stress – through yoga poses, and possibly meditation – on their own terms. They won’t have to leave the hospital. They won’t even have to leave their child’s room if they don’t want to. I know what that’s like. I know how terrifying it is to leave your child’s side when every moment counts. I want to let these parents understand that they are allowed to take care of themselves even when their child is struggling. Despite the fact that their child is struggling. Their well-being matters, too. It’s too easy to forget that.

We didn’t handle the fallout of our sick child very well. Matt fell into alcoholism. I fell into the arms of a married man. We all fall into something. Why can’t the thing we fall into make us stronger instead of tear us apart? I learned the hard way and I want to help others from making the same mistake. Not that my teaching relaxation techniques is the cure-all that will stop people from making poor decisions, but it IS about learning to love yourself and working from the exact point where you currently reside. If you truly love yourself, I believe you’re less likely to do things that will cause you harm.

I’ve learned so much about myself in the past two months – it’s so wonderfully ridiculous. I now understand why I went searching for outward support instead of looking within to my reserves of strength that I already had. Trauma and fear put me in a bad spin that encouraged me to make poor choices. It doesn’t have to be that way.

I know some of you will point to religion here. That this is where my faith and strength should lie. And I can understand and appreciate your view on that. But, in my situation, religion has been way more hurtful than helpful. It’s nothing against God. My problem is with religion. I’m a big fan of God, but religion has shown me the opposite of what God is truly about: Love. Even the pieces of yoga that have religious concepts are of no interest to me and not what I would be teaching. And this doesn’t mean that if you’re a religious person then you’re of no interest to me. I love and accept you, as you are.

And that’s all I ask of you. Don’t be all judgy.

What is love? Love is truly the answer, my friends. And you can’t love others completely and fully unless you first truly love yourself.

My Rhonda

One of the most terrifying moments of my life was when my parents dropped me off at Ohio University in the fall of 1986. While my childhood wasn’t devoid of terrifying moments up to that point, I was nervous to be living in completely new surroundings and having the exhaustingly daunting task of making new friends. Shyness had been an overwhelming part of my character since birth and while I was internally excited to meet new people, I was absolutely terrified that nobody would like me. Not only was I shy, but whenever I did say anything, it tended to be incredibly awkward and misread entirely.

I was weird.

So, when I was presented with a group of 11 new “sisters” my freshman year, I didn’t know what to do. Our dorm, Fenzel House, was an experimental living arrangement. All the students had a private room and the floors were grouped into “mods” that shared a common major. I lived on the first floor with eleven other girls who had claimed majors in communications. I don’t remember what majors the other floors were, with the exception of third – they were the business kids.

I bonded most with my mod-mate Paula those first couple of weeks. She was cool and down to earth and just so funny – traits that I possessed but hadn’t fully developed at the time – so our friendship was meant to be. That, and she was persistent in trying to break through my hard, non-communicative shell. I should mention that I was geared towards the photojournalism piece of communications, not the actual act of communications. Anyway, Paula is still one of my most important friends to this day.

But I remember very clearly the moment that Rhonda Collins entered my life. To quote Miley Cyrus, she came in like a wrecking ball. Blonde hair, blue eyes, big boobs… a real head turner. Her aesthetics coupled with her immense personality dictated that she was not to be ignored.

I was standing in the hall right outside my room heading to the bathroom with my shower bucket of toiletries. She whizzed past me (her room was right down the hall from mine) talking about some party that she’d just been invited to. She didn’t say anything directly to me, she was talking to another mod-mate, Ann (another super groovy chick who is still a part of my life.)  But as she made eye contact with nearly-naked me as I was heading to the shower, I was struck by her verve. Never had I seen someone with so much charisma. So bold. Fearless. Would talk to absolutely anyone. Had like 75 boyfriends. There was an air of excitement surrounding her. She was the polar opposite of my quirk. And she he scared the absolute shit out of me. Nevertheless, I wanted in. I told myself that somehow, some way, I would get to know this person.

Being the non-communicative, anti-brave person I was, our friendship had to happen in a roundabout way. It was our mod-mate Ann who eventually brought us together… Ann and Rhonda (or Ronnie as we knew her in college) were besties. Ann is one of the most interesting people I have ever met. She and Rhonda did nearly everything together. Ann and I had a few moments of bonding prior to her bringing Rhonda in, namely altering our ID’s to allow access to bars. After I experienced the great shock of my step-mother’s suicide right before spring break, Ann decided to include me in a trip to the East Coast she had planned with Rhonda to take my mind off things. Rhonda handles everything with minimal nonsense. She’s blunt. She’s direct. She sometimes says things that completely catches me off-guard. But she showed me nothing but love on that trip. It was a life-enhancing moment and cemented our budding friendship.

I guess after Freshman year we didn’t hang out like we did that first year, but we were still friends. She went to law school in Columbus and lived in the same neighborhood as my parents. I just happened to be sponging off my parents for a bit while I was a social worker downtown – and battling my own stupid cancer (nothing in comparison to what Ben has gone through.) And while Rhonda was still the polar opposite of me – she made an effort to be there for me during my tough times.

Right after my cancer stuff, I moved to Colorado by myself. I lost touch with many of my Ohio friends over those eight years of being a ski bum. I’m pretty sure it was Ann who brought us all back together when she got married in 2005. Rhonda and I were both in her wedding. Rhonda had gotten married around the same time I did and her children were nearly the exact age as my Ben and Madeline. I had changed a lot – most likely because we had just finished up the first big battle for Ben’s life – but Rhonda was exactly the same.

Ann’s wedding was fun. Rhonda and I reconnected in a way that brought us so much closer. I adored her amazing husband, Jeff, and her brilliant children. I knew that this time we wouldn’t lose touch.

We haven’t.

Nearly three years ago, Rhonda decided to bring her family to Colorado. That’s how she does things. She just wakes up in the morning and says, “this is what I want” and she makes it happen. I admire that about her. If she physically possessed testicles, they’d be the size of Texas.

We’re an unlikely pair, Rhonda and me. But I think we balance each other nicely. I’m sure I irritate her with my laissez-faire ways because she’s the type who takes the reigns and doesn’t sugarcoat a single thing while my horse gallops freely in a land filled with cotton candy.

And there are times she still scares the shit out of me because she makes me look at my life in ways I don’t really want to see. I trust her 100% because she’s never told me anything but the truth about how she feels – even when it’s brutally hard to hear. And I honestly love her because of that. She’s told me on several occasions that I’m a good writer – and I believe her – because it’s simply not her way to blow sunshine up anyone’s ass.

Two days ago as we were riding a chairlift at Breckenridge, she leaned her helmeted head to rest on my shoulder as we looked at the brilliant sun shining through to pinecone laden trees. It was a perfect moment. Of course, just a few minutes later, we were singing opera to everyone else on the chairlift as skiers whizzed by beneath us, our laughter slicing through the crisp air. We’ve lived a lot over the past 30 years but I’m so proud to say that despite our differences, we’re more solid than ever.

So, cheers to my dear friend, Rhonda. I’m proud to be a part of your circle of family and friends. Your support – in all manners – has enhanced my life greatly.

I love you.

2015

Happy New Year!

I realize that I’m four days late in saying so, but here it is, already four days into the new year and I’m just now getting around to it. It’s 12:45 pm on a lovely Sunday and I’ve only taken – according to my FitBit – 202 steps so far. That means that I’ve gotten out of bed long enough to go to the restroom and allow my dogs to do the same. That’s it. I’m sure I’ll hit my goal of 10,000 steps by the end of today. Or maybe I won’t. Who knows? I like to keep things in a shroud of mystery.

Writing has been difficult for me lately. Not because I didn’t need a cathartic outlet – you know I always do – but I just didn’t feel like it. I’ve slipped into that weird crack of Ben being healthy enough to not need major care. There will always be clinic appointments and medications and scans and the search for the all-elusive cure, but right now we’re definitely experiencing a “light schedule” of needing anything. It’s weird.

Please don’t get me wrong, I’m totally grateful. Clinic once a week instead of three? Whoa! Think of how much I’ll save in gas money! Meds reduced significantly? Yay! Ben doesn’t have to have a pillbox tantamount to that of an elderly schizophrenic with high blood pressure and diabetes. Sometimes I need the rigor of a demanding schedule. It keeps me focused on DOING instead of FEELING. I don’t have as much time to think or feel when we’re constantly on the go. Then, when I’m told we can scale it back a bit, my brain turns on and I simply flip out. I have all the time to think about all the things I’ve been putting off. What I’ve been putting off for almost two years. The flood overwhelms me and I have to make adjustments on how to deal with that.

But it’s nothing new. We’ve hit these dry spots several times throughout the course of his therapy. Rarely does it last long enough to become comfortable with it before we’re thrust into where our comfort level unfortunately lies: being in treatment. I’m sure when the trips to NYC start up in a month or so, I’ll easily transition back into therapy mode. And part of me will be grateful to having a schedule again – a life where somebody else dictates how we spend our time.

Really? Is that my comfort level? That blows, doesn’t it? I’ve been so afraid to feel for so long that I’ve even drummed the FUN feelings from my soul. Boo.

Since I’ve realized this, I’ve been desperately trying to take those small moments of dryness and making the absolute best of it. All that matters to me is finding the JOY whenever possible. I recently downloaded an app called Roadside America and it lists unusual attractions all over the US. I only purchased the Southwest piece of the map because that’s where we live, but apparently there are little nuggets of wonderfully outlandish things all over the U.S. Yes, it’s a little Clark Griswold-ish, but this is a perfect app for quirky kids – like myself – who like the ‘off the beaten path’ way of life.

Yesterday, I chose Manitou Springs – a city we’ve been to a million times – and found loads of unique things to do. We saw the World’s Largest Beetle AND School desk, we toured Miramont Castle, drove through Garden of the Gods (been there, done that, but still love it every time!), visited a true penny arcade where pinball only cost a quarter, and ate dinner in a revamped military airplane where you could act as pilots and push ANY BUTTON YOU WANTED! No buttons were off limits! We made a full day of it and there was still more quirky things we didn’t see.

Out of all the adventures I’ve taken my children on over the years, this was one of their favorite days. Ben told me on the way home that it was “EPIC.” I’m happy to have had a part in giving my children the delicious gift of being unconventional. 🙂

So. What are my New Year Resolutions? I guess I don’t have many. Sure, I’d like to exercise more, I’d like to manage my free time better, I’d like to widen my circle of weirdo friends, I’d like to finally get that novel published…. But I’m going to stick with the pursuit of finding as much joy as possible and I’ll add in this: Be BADASS. I can be badass anytime, anywhere. It doesn’t require a schedule. It means standing up when something doesn’t feel right. Or putting a jackhole in their place. Or loving the unloved. Or shaving my head for St. Baldrick’s, (which will occur on March 13 – be sure to donate!) Or just simply exuding kindness. And, of course, maintaining my gratitude for all that I do have.

I am thankful, for each and every person who has trusted their heart enough to follow our journey. To love us. To comfort us. To laugh with us. To cry with us. To cheer us on or protect us. And to those who couldn’t handle us, thank you for exiting our lives. That sounds weird, but I am so grateful to the weak who couldn’t hang. Who couldn’t love. Who couldn’t care. Who WOULDN’T care. I can’t deny that it hurts, but I honor those who chose to leave. I send you light and love and heave a sigh of relief to erase you from our lives to make room for stronger support.

Make 2015 “EPIC,” dear friends. Find the joy. Be BADASS. Be kind. But don’t forget to be thankful. Gratitude opens hearts and allows everyone else to see what makes yours beat. Not physically, silly! That would be totally gross. I’m talking about emotional. Allow yourself to feel, dear friends. Allow feelings to guide you to the desires of your heart.

And that’s when you’ll find the courage to LIVE as you should be.

 

 

 

 

supporting role

My daughter, Madeline, is an amazing child. She was born just six weeks after Ben was diagnosed with neuroblastoma and has spent every day of her life since then living in the shadow of her brother’s illness. NOT in the shadow of her brother, mind you, but in the shadow of his illness.

Even her birth was overshadowed. No big baby shower. No swarms of people coming to ooh and ah over her because we basically went from the hospital in which she was born to the hospital where her brother was being treated. The night nurses at Children’s were a big part of her first fan club. They carried her around on their rounds, sat with her at the nurse’s station as she smiled her brilliant, toothless smile at all the suffering children on the unit – she was a little “happy magnet.” You couldn’t help but smile when you saw this beautiful, sweet baby. It’s funny that I was so worried about bringing a new baby into our crazy environment when it was she who single-handedly saved our weary souls.

Maddy was a perfect baby. She was rarely fussy. Other than starting off as severely jaundiced, she didn’t have any medical issues – not even a cold – until after she was a year old. And her brother adored her. That was the best part of all. Maddy was a positive focus that Ben needed. Even at his worst – during transplant – she brought a sense of calm and much needed normalcy to our weird little world.

She knew exactly what we all needed.

As she grew, she had to deal with her major milestones being dominated by her brother’s medical needs. Her first steps were taken as I was rushing around the house trying to gather up all we needed to take a feverish Ben to the hospital. Her first day of Kindergarten was spoiled by Ben’s first relapse. Mad’s Kindie teacher was nice enough to make all the kids “re-pose” for that first day of school photo that all the other kids had taken the week prior, just so I could document her first day of school. She’s missed out on countless sleepovers due to potential germs or dashed plans thanks to a random fever.

And she takes that backseat every single time.

But I don’t feel that this has all been a total loss for my darling daughter, for she knows a compassion that many will never understand. Her heart swells when she hears of anyone ailing. And, as for her friends, she tends to be the voice of reason in the midst of adolescent angst that consumes so many young girls at this age. Man. Does the drama start earlier these days or what? I don’t remember so much drama when I was 10.

Regardless, I know that Ben’s medical woes have made her the person she is. And I absolutely adore who she has become. I was trying to remember what I was like at the beginning of Ben’s journey. I was kind of an assh*le. Self-centered. Entitled. Expected my world to be perfect because I’d worked hard on career. But these wonderful little things called children kinda screwed all that up for me – and I’m so thankful. My reason-to-be doesn’t lie in a career. It doesn’t lie in where I live or what I drive or how awesome everything is. I’m still kind of a self-centered turd at times, but ultimately, when I see my daughter wrap her arms around her brother in hopes of bringing him comfort, I know I’m raising hope.

And that’s what I was meant to do.

The last time Ben relapsed, he wanted to be the one to tell his sister. We had just left the hospital and we were picking her up from an outing with friends. She smiled as she saw her brother cross the room to get to her. I watched from afar as Ben’s lips moved, telling her what he knew, and watched the smile disappear from her lips as she listened. She glanced at me. As our eyes connected, I saw the question of “what are we going to do?” and all I could give her was a teary look. I hope I conveyed some strength in our connection but I’m sure she saw my expression of fear. As she broke her gaze with me, she enveloped her brother in her arms and simply held him, rocking him as her face leaned down to touch the top of his head.

What I saw that day was sheer bravery. From both of them. How brave for Ben to share the bad news with Mad, and how brave for Mad to push away her fear and simply give her brother what he needed. No. I’m not raising little assh*les at all.

All this time, she’s been 20 feet from stardom. All the attention that goes to her brother might be irritating at times, but she knows that her supporting role is the role of a lifetime. And it’s been a star-making role for her. She doesn’t get the credit she deserves all the time, but she knows what’s important.

Before you become insanely jealous that I have absolutely perfect children, don’t fret. They do fight from time to time. But at the end of it, when nobody’s looking, I see one of them wrap their hand around the other’s and hold on for dear life. They’re in this together. Undoubtedly loving each other with all they have. Taking a supportive role to each others’ stardom, knowing that being together makes them stronger. Better. Unconquerable.

Against all odds.