Author: Sarah Brewer

Darn it. The one day that I’m allowed to shirk housework and here I am in NYC doing the antibody gig with Ben. Oh well. I’m sure I’ll take a raincheck and celebrate it when I get back to Denver. Housework is a total drag.

Not that being in NYC is much better. This is round seven of antibody therapy. Or is it round eight? I’ve lost track. Wait. What day is it? Heck, I’m not quite sure what year it is. I feel so lost in the shuffle of everything that is happening around me that I can’t grasp my immediate surroundings. All I’m sure of is that Ben is doing day four of antibody therapy, which means there’s only one more to go. Whew. Round seven – or eight – will be done.

Monday was bad. Ben screamed during initial therapy (which is the norm on Mondays), while Madeline played in the hospital’s play room. She crafted and watched movies as Ben was tortured with his painful treatment. After a long sleep, we went back to the Ronald. Ben slept peacefully for a while but then woke up needing to vomit. He didn’t make it to any receptacle. Now, this has happened plenty during Ben’s therapy, but I have to say that I’ve never quite gotten used to cleaning up vomit. Especially chemo vomit. Yes, it’s different. It’s not like anything you’ve ever seen or smelled, unless you’re a cancer parent or health care professional.

So, as I was trying to clean up Ben’s streak of green goo, he started crying out in pain. This usually means that he needs a heat pack applied to his stomach, back or feet, and he needs it STAT! I was furiously trying to clean off my hands and tend to him. Since I was briefly incapacitated, Madeline figured she would be helpful and get out a heat pack for her brother.

These heat packs are difficult to get started – you have to “pop” them to activate the heating agent. I’m supposing the liquid in the enclosed baggie opens and mixes with something that makes it heat up. I’m not sure how the science stuff of it works, all I know is that we go through a tremendous amount of them the week of Ben’s therapy. I’ve gotten to the point where I can pop them with one hand, but it’s not the easiest feat. Well, Madeline, bless her heart, was trying and trying to pop the pack because I couldn’t get there fast enough. She couldn’t do it with her hands so she tried with her feet. Yes, her feet. She placed the heat pack on the floor and jumped on it with all her might. I came out of the bathroom just in time to get sprayed with a projection of what I was hoping to be NON-TOXIC, coarse, salt-like goop. First puke, now this. I was ready to cry but could only laugh. Hysterically. Mixed with a little hyperventilation.

So, what I always do when faced with something I can’t deal with, I covered up the mess with a blanket and decided that I would deal with it later. Much later. Unfortunately, by the time I got to it, it was as hard as a rock. I figured that I’d be paying the Ronald a pretty penny to replace the carpet since the aftermath of both puke and (what I learned was, indeed, non-toxic) cement-like goo had caused some serious damage.

I spent a good chunk of yesterday lying on the floor and trying to scrape off the hardened goo with my debit card, which was completely fruitless. So, I covered it back up. This time I used a wet towel and debated whether or not if I should do the walk of shame down to the front desk to tell them what we had done. I envisioned us being banned from the Ronald for good. My daydream went as far as to include being carted away by Ronald himself. Oh, the shame of being deported from our sanctuary by a clown.

Before I decided to go rat us out to the Powers That Be, I lifted the towel to reassess the damage. I was stunned to see that the water had dissolved the hardened cement! YAY! I got more towels and laid them down before leaving for today’s antibody treatment. I’m hoping that everything is back to normal by the time we get back to our room today. Whew. Thank you, Lord, for water. That was a close call.

Besides this bit of excitement, we’ve tried to have some fun in cold, rainy New York City. My sister, her children, and my dad came into the city over the weekend for Madeline’s birthday. My sweet little baby turned seven on Sunday! She woke up on her special day to an “Oscar” award stating that she was the World’s Greatest Daughter, which she absolutely loved. My sister took her to get her nails done. We took a bus ride around the lower part of Manhattan. We saw Greenwich Village, Soho, Ground Zero, Battery Park and the Statue of Liberty, Chinatown, etc… a lot of spots that I hadn’t seen yet. It was fun. After my family left, the kids and I went to see Wicked. Madeline LOVED it. I think, overall, it was a very special birthday.

The dynamic of having Madeline here brings a bit of normalcy to the antibody experience for Ben. She gets to see that Ben is NOT running to NYC every eight weeks so he can skip school and have fun in the Big City with mom. She sees first hand the hell that he goes through. She sees that there are other siblings – like her – who are thrust into the maniacal shuffle of a world called “Cancer”. She’s not alone. She’s good at making friends with these kiddos. She can see past the missing limbs, vicious scars, and lack of hair. She’s not bothered by the IV’s or bags of medicine that they have to pull around with them. In fact, she sometimes struggles with the fact that you have to be EXTRA careful around the tubes and IV’s. They are attached to these kiddos. It’s the one aspect that makes me extremely nervous when she’s playing with them.

I was chatting with a dear friend last night – one I should speak to every day that I’m feeling as depressed as I was yesterday. As she answered my call we were already laughing with each other before a single word was said. I told her about Madeline being a bit of a “bull in a china shop” around the IV’s and such and she said “Like the Nun from the movie “Airplane?” I howled with laughter and started my rousing rendition of “There is only one River”. If you haven’t seen this scene it’s worth a look. It describes my Madeline with great accuracy. 🙂 Thanks, Joyce, for the laugh. I’m still chuckling over that one!

Ugh. I need to run. Ben is struggling. His heart rate is through the roof and I just know he’s going to be crying out for a heat pack any minute.

I’m glad I know better than to smash them with my feet.

The funeral director wore a yellow tie emblazoned with clocks. Clocks. Every single clock stated that is was three o’clock. I don’t know if it was AM or PM but all I took away from the experience of the yellow tie was “your time is up.”

I couldn’t tear my eyes away from that tie. In some muffled section of my brain I heard his questions. His voice sounded so far away as he asked questions like “what was your mother’s middle name?” and “what was her life’s work?” I, in conjunction with my dad, answered his questions but I couldn’t help but be focused on that tie.

Tick. Tock. Tick. Tock. I wonder if he consciously picked that tie? Or was it a gift? Perhaps for Father’s Day? Did he had children? What made him want to be a funeral director? Had he, too, buried his mother? Was he interested in the embalming process and encouraging his family into picking out just the right casket for mom? All these questions he was asking me made me think of some of my own. I wanted some questions answered, too. Like where was my mother? Was she all alone in a dark place? Did she need a blanket? Was her hair still braided like it was when she died?

Did she miss us?

Mom passed away peacefully on Friday, March 25 at approximately 7:15 PM. She was 67 years old. For a woman not particularly known for being peaceful, her quiet death was quite a beautiful thing to experience. At least it was for me. As it stood I was nearing my snapping point. In addition to losing my mother, my son has antibody therapy in New York City next week. My daughter is getting ready to celebrate her seventh birthday and I’m feeling guilty about yet another one of her milestones getting overshadowed by cancer treatment. I’m completely overwhelmed. So, for mom to go quietly within a couple of hours after being taken off life support, well, I found that to be an amazing blessing. No more machines. No more tubes. No more pain or suffering. She was finally at complete peace.

My sister, father and I have collectively decided not to have the service until after Benjamin’s next round of antibody therapy. That gives us some time to plan and catch our breath before honoring a very complex woman.

My sister and I have picked out the clothes she will wear. My dad and I picked out her casket. Honestly, we had picked out a simple shaker style casket used for cremation – minimal metal – but when we saw an eco-friendly basket style casket, we knew that was the one. Simple yet very unique. Smart. Completely unexpected. You’d never see that coming. I think it captures mom entirely.

We’ll have a cocktail hour. We’ll show pictures of her enjoying her grandchildren and her beautiful gardens. We’ll celebrate her life and her passions. We’ll probably tell stories about what a firecracker she was. We’ll definitely share how much we will miss her.

As for me, all I can think about is what she planned to do when she died. When I was much younger, I was cut from 7th grade chorus for my inability to sing. Mom told me that she while she was never a good singer either, she knew that someday – when she died – the first thing she would do when she got to Heaven would be to hit a “High C”. I like to think that she’s basking in the glow of her new Heavenly home and hitting all the high notes of the new life she’s been given.

And not missing us a bit.

Everyone just assumes that I’m Irish because of my red hair and fair complexion. The fact of the matter is that I’m a mutt – an amalgam of any number of Nationalities (I’m guessing there’s a few that I am NOT a part of) – but, sure. I’ll be Irish. Aye. Especially today.

I am a red head. A ginger. A bluey. A carrot top (even though those are green). A firecracker. A copper top battery. A siren. A witch. I’ve been called it all. Having red hair was the bane of my existence as an adolescent but now I fully embrace being a red head. Plus, despite my having a ton of gray hair you cannot see any of it because it blends in. I have natural highlights that I don’t have to pay for! Jealous? You should be. My hair is stunning. Every hairdresser says so.

Before you start to think that my daily existence revolves around shaking my glorious crown of red hair in front of a mirror, let me tell you that it hasn’t always been a pleasure being a red head. There’s the fact that my 16th chromosome is mutated, which not only gives me my red hair but also makes UV rays a natural enemy. The sun just adds more freckles to my collection and unless I’m out all day, every day in the summer, I do not tan very well. Even the sun has to put on sunglasses to deal with my glare.

While being pale today does not hold the same stigma it used to, I grew up in an era where it was popular to lay out all day coated in baby oil. The only thing to do during the summer was to go to the pool and be in the sun all day. That was so not happening for this little red head. While my girlfriends frolicked I hid in the shade under whatever was available while waiting for my Sundown “water-proof” sunscreen to dry. Honestly. You had to wait an hour for Sundown to dry but had to reapply it every 30 minutes for it to be effective. There was just no winning.

I remember one time during my youth, my aunt took my cousin and I to the swimming pool in Pataskala, Ohio. My usual hangout was the pool in Baltimore but most of the kids from my school went to the pool in Pataskala, so I was really excited to go. My cousin and I skipped through the front gates giddy with anticipation. We stripped down to our swimsuits but I left my t-shirt on – as I normally did – to protect myself from the sun’s evil rays. Before I could jump in the pool, a mean old man ran out to the poolside and yelled at me for having a t-shirt on. He said I could not swim in the pool wearing a t-shirt. He insisted that I take it off if I wanted to enjoy their amenities. Well, my aunt showed him… we left. She didn’t argue. She didn’t try to reason. We packed up our stuff and split. I was devastated. They should have just had a sign posted: No Gingers Allowed. I wonder if I had stayed and gotten a sunburn, would I be able to sue for reparations?

Thankfully, today’s redheads are equipped with SPF 10,000 and UV protection tops to wear in the pool. They got it made (in the shade). And I’ve gone on to give the world yet another Ginger. My Ben is a redhead. No matter how many times cancer comes and knocks out that kid’s hair, it ALWAYS comes back in RED. He’s determined, no doubt. He’s a firecracker.

And, FYI, Red heads will NOT be extinct in 100 years as the National Geographic “article” so wrongly reported. There are actually more redheads now than there have ever been.

Sorry, Ginger haters. We’re here to stay. 😛

Today is a fairly new holiday… someone tweeted that there should be an International Day of Awesomeness and the Powers That Be commanded it to be set in stone. It’s also Chuck Norris’ birthday, so I think International Day of Awesomeness came into existence 71 years ago when Chuck was born. Chuck is the bomb.

I wrote about Chuck last year on his birthday so I’m not going to give a repeat performance. I could never top a prior post on any given topic anyway – that’s how awesome I am.

Yeah, I said it. I’m awesome. I’ve lived a lot of my life mired in a pit of self-despair and loathing. It stemmed from many things that happened during my life – being repeatedly thrown over the edge with little to no support – and I just never believed in myself. I wasted so much time thinking that I wasn’t awesome. Then I realized it’s all just a matter of perspective.

You are what you think you are. If you think you’re a victim in life, then that’s what you are. I’m not saying that bad things don’t happen – they absolutely do – but YOU choose how to deal with it. Everything happens for a reason. And while I really hate that cliched phrase and sometimes it makes me want to punch the person uttering it, it’s ultimately true.

Bad things happen. People die. Jobs are lost. Relationships fall apart. But if you can’t see past the bad and focus on the good then you are missing out on your awesomeness. I’m not saying these things don’t hurt. I’m not saying “man up and take it”. I’m saying mourn the sad things and embrace the happy things. So many of us gets stuck in the yuck that we can’t see our own awesomeness. Each and every one of us has the power to be awesome.

Gosh. I sound like I’m trying to be a motivational speaker. All I’m saying is that I’m tired of living a sub-standard life because I have believed that I didn’t deserve better. I won’t be living there anymore.

Last night, we went to an Ash Wednesday service at church. The sermon was on the whole “giving something up” for Lent versus becoming focused on your relationship with God. Instead of, say, giving up chocolate for 40 days, why not try deepening your relationship with God through prayer or getting involved with a charity or whatever taking that next step in your journey would look like. I’ve decided that I’m giving up being envious. I’m tired of wishing I had entirely different situations. I hate that my son has been battling NB for seven years, but it’s a fact. I can’t change it. So, instead, I’m embracing how he has taught me to be stronger. I’m celebrating all the young lives we’ve had the privilege to be a part of – even though we’ve lost some of those dear friends. I’m encouraged by how my writing about this pain has benefited so many others – those on the same journey and those following from the sidelines. Nobody has a better life than me. I’m going to stop being envious of those around me – those fancy new cars, gigantic new homes, kids that excel at everything, people who seem to have it all – I’m letting all that go. I have nothing to be envious of because my life is so rich.

I’m freaking awesome.

You are, too.

I’m all for bagels but not so much on the lox. Thinly sliced pieces of cured salmon will do nothing but ruin my perfectly delicious breakfast treat. I just never got into fish so adorning my bagel with anything that used to swim is not my idea of “yum”. Instead, I’ll celebrate bagels and lox day with an “everything” bagel with schmear, hold the lox.

Actually, it’s too bad that I’m not in NYC for this special day. Manhattan is the hot spot for delicious bagels. It’s probably one of the only things that I get from the hospital cafeteria with any regularity. Plus, Ben likes them. That, in itself, is a miracle because that kid likes NOTHING. Interestingly enough, I never see any of the Jewish population at the hospital eating bagels from the cafeteria. Then again, I’m doubtful that the hospital cafeteria is kosher.

We just returned from NYC on Sunday and I immediately came down with a sinus infection. Ben, thankfully, has escaped getting sick from all the travel we’ve been doing lately. My head was so bad that I ended up going to the doctor instead of letting it run its course. If there were meds to be had, I needed to have them stat. I don’t have time to be sick. I”m grateful that my sinus infection had the decency to wait until I was through a week of 3F8 and scans, but I still have stuff to do. No time to be sick. No time to be sick. NO TIME TO BE SICK. If I say it enough perhaps it will feel unloved and just leave?

No. It is refusing to leave quietly. Blowing my nose sounds like a foghorn. I’m a lot better – two days later – and am finally catching up a bit. I still have a fair amount of congestion but at least I can stand up without feeling like my head is going to explode. So, for now, I’m waiting. Waiting for news from the hospital. It’s always something, right?

Ooops. I got sidetracked. It’s a couple of days later and even though I’m still a teeny-tiny bit congested, I feel mucho better-o.

The news from the hospital was outstanding: Ben continues to show no evidence of disease. Hoo-flipping-ray! We’ll go for blood work tomorrow afternoon to see if more doses of antibody therapy are needed. Fortunately, we’ll have several weeks off before needing to go back to NYC, so I can focus on other stuff: like how my mother is doing and getting ready for Madeline’s birthday. I can’t believe Madzilla is going to be seven. I can’t believe we’ve been dealing with this stupid neuroblastoma for seven years. Of course, some years were easier than others, but it’s been wreaking havoc on us and wearing us down for seven flipping years.

I don’t know what I’d do without my Madeline. She has been such a bright light in my life over the past seven years. I didn’t know how I was going to bring an infant into Ben’s world of neuroblastoma, but she made the transition beautifully. She saved me from falling off the cliff. I had to take care of her. I had to take care of Ben. All I could do was focus on them and take each day as it came. Fortunately, we all survived. And Madeline offered such sweetness through her amazing spirit. She was such a wonderful, good natured baby and has grown into a very bright little girl with a tremendous sense of humor. I simply do not know what I’d do without her.

I know, this post was disjointed and random. Going from bagels to sickness to No Evidence of Disease to how wonderful Madeline is… I bet your head is spinning.

Now you know how I feel all the time. 🙂

Ben is being bullied at school. I learned of this last night as he was under the influence of all his drugs from his day of 3F8 therapy. He was feeling a little weepy from the aftereffects of not only the 3F8, but the dilaudid (pain killer), the fentanyl patch (more pain killer), and respiridone (anti-anxiety), too. All of this medication acted as a truth serum of sorts and he laid out the facts of what was happening at school.

I had no clue.

I’d heard him talk about this kid before – we’ll call him “E” for our purposes here – but I thought “E” was just a minor hooligan instead of a full blown bully. He’s in Ben’s class and I guess he’s been saying hateful things to Ben since he started back to school.

I’ve seen this kid in action. He was terrorizing a kid while walking home from school last week. “E” threw a large chunk of grass at this boy’s head and hit him right in the face. There was dirt in his eye and a nice red mark right underneath. I happened to be the only adult around so I soothed the boy while “E” seemed to not care that he had hurt someone else. I told him that it was inappropriate to throw things at other people, especially at someone’s face. He said sorry but I could tell it wasn’t heartfelt. I didn’t really give this “E” a second thought because, well, boys will be boys. They play rough. I turned my attention to getting the dirt off of the boy and let “E” leave. Had I known that this kid was terrorizing my son, too, well, I might be in jail right now.

So here’s what’s been happening: “E” makes fun of Ben for being little. He said that only nerds have freckles and that Ben looks like a dork. He said that Ben will never get a girlfriend because girls don’t like “shorties”. He thinks it’s funny that Ben has had cancer. He told Ben that he looks like a little rat. He laughs at Ben daily and calls him names.

Ben just wants to be friends with people. He’s not interested in acting like this “E” character. Ben is good natured and has a very sensitive soul. This “E” is breaking his heart and Ben just doesn’t understand why.

Of course, while Ben is pouring out his heart to me, we’re both crying. Tears streaming down our faces as Ben recounted all the hurtful things that “E” has said. And while I reminded Ben that these were just “words” I couldn’t help but be hurt by what “E” has said, too. It makes me sad. Angry. Ready to call this boy’s parents and say “WTH?” But instead of going that route I suppose I’ll contact the school first. Ben told me that his teacher has already confronted this “E” on his bad behavior towards Ben. She made him apologize for calling Ben a rat.

I asked Ben if going to school was too much. He said he loved going to school but “E” took away from that. I want to wrap Ben up and protect him from the world but know that this is not reasonable. He needs to live. He needs to learn how to deal with bullies. He needs to have the freedom to be a normal boy.

But he’s not normal. He’s extraordinary. I think he should be exempt from all this tedious hooey.

So, I’ll help him with strategies on what to say to this “E” when he says hurtful things. And I’ll wipe his tears and offer my support whenever he’s hurting. And I’ll tell him that life isn’t fair.

But he already knows that.

I sat in Ohio and waited for my mother to either get better or pass. She didn’t do either. So I ran back to Colorado to get ready for Ben’s next round of antibody therapy. I packed. Got to the airport. Got through security with all of Ben’s liquid medications (they make me open all of them just in case I’ve got something explosive in there – like I have time to be a terrorist on top of everything else). We settled in at the gate only to be told that our flight would be delayed. No big deal. Waiting is my hobby. I LOVE to wait*. Then we waited some more. And a bit more. And then they made the announcement of  all flights into NYC were canceled due to severe weather. What? Awwww, man!

So we had to rebook. Reschedule scans. Recall our bags from wherever they were. I was stymied when asked what our bags looked like. What? They’re suitcases. They look like everyone else’s bag. I mean, isn’t that the announcement that you make at the baggage claim? “Many bags look alike, please check that it’s truly your bag before absconding with someone else’s luggage”. Seriously. Like I want someone else’s baggage. I’ve got enough of my own.

The kind woman working the counter encouraged me to consider leaving my bags at the airport until we flew out the following day but I figured that would be flirting with disaster. Plus, I had the Wii packed in there. We actually ended up flying out three days later since all his scans were cancelled. Had I left my bags at the airport I would have been looking like a worn out hobo by day three seeing how all of my beauty products were packed away.

We flew out Saturday, chilled at the Ronald yesterday and today, Ben and I are sitting in the waiting room at MSKCC. Ben is playing a game on his computer and I’m trying to post an entry on mine. The clowns come through every so often to entertain us, but mostly I just sit and watch all these families coming through with their critically ill children. We are “second bed” today which means we have to wait for a kiddo to finish up before we can even start. Mondays are already long and tedious – with all the blood work and accessing of his port and seeing his treatment team – but this just makes it all the longer. There’s no telling when we’ll get out of here.

He tries so hard to not be anxious. So do I. And unless those clowns are dispensing some anti-anxiety meds along with their “humor” I’m really not interested in their antics.

Writing is not making me feel any better. I’m sad that my outlet isn’t bringing me any comfort. There are a lot of babies here today. It makes me so sad. Parents trying to hold their children. Comfort them. Cradle them amidst all the IV’s and feeding tubes and catheters. The simple joy of being in their mother’s arms has been taken from them. I’m just so angry.

I’m thinking I might go punch that clown*.

(*not really)

My life has revolved around airports and hospitals lately. I’m wondering when I’ll get my “frequent flier card” for all the hospitals I’ve been in recently. There must be some sort of reward program, right? I should get a discount on something. A free nights’ stay, perhaps? Maybe some left over anxiety medication? A complimentary electroshock therapy session? Free food from the cafeteria? Or maybe some half-price liposuction to take care of the lumpy butt I’m sporting thanks to all the inactivity? But no. I get nothing.

Don’t worry. I haven’t completely lost my mind. This is just my strange sense of humor trying to get me through watching my mother suffer through the bout of strokes and heart attacks she’s recently had. If not for the mad inner-workings of the thing I loosely qualify as a “brain” I would be a quivering mass of jell-o on the floor.

My sister and I were in Central Ohio trying to help out our dad in getting mom settled into some sort of nursing home. Things deteriorated so quickly for mom over the last few weeks that we’ve now made plans for her to move into a nursing home with hospice care. Hospice care. End of life care.

This is the end of my mother’s life.

That is completely overwhelming to me. Just weeks ago she was her old self. Now she can barely open her eyes and often doesn’t recognize who we are. Then there are moments of clarity that make me believe she’ll miraculously recover only to be dashed by her having some sort of hallucination.

She told me that her mother is coming to get her soon. Her mother died in 1968.

My mother and I haven’t always had the smoothest relationship. I will readily admit to that. But to think that her life is coming to a close – well – I just don’t know what to do with that information. It doesn’t seem possible or real. And, unfortunately, I can’t give her my all because Ben has scans and 3F8 coming up. My concern is that she is going to die while Ben and I are in NYC and there won’t be a thing I can do about it. I won’t be able to leave Ben. I won’t be able to attend her service. I won’t be able to say goodbye.

So, I’ll just have to keep up the charade that I have a normal life while everything around me crumbles. So much stress, so little time, right? I’m afraid that I’ll get to the point of not being able to compartmentalize everything and explode like a roll of Pillsbury biscuits. All you’ll hear is a loud pop followed by the contents of my head oozing out from between the cracks. The main difference is that my contents come pre-baked. They are complete toast.

Ah, I should stop here. Gotta pack. Maybe that will keep my mind off of the craziness that surrounds me. I’m not entirely sure what I’m packing for, which makes for a lot of baggage. I could fill an entire Airbus A380 (a real, real big plane) with all my baggage.

This trip is going to cost a flippin’ fortune in baggage fees.

Oh, that first touch. The one that pulls at your heartstrings and tells you that you’ll never be the same. The way that little hand wraps around your finger, so small, so delicate, so sweet. Your heart does somersaults and you might even feel a bit sick to your stomach from all of the overwhelming emotions coursing through you. Those first moments are so precious and simply unforgettable. Knowing that you’re responsible for the little life that is resting in your arms is the most important thing you’ll ever do.

It was the job I was created for. I had no idea how hard it would be. When my firstborn – Ben – was placed in my arms, a lot of things became unimportant. Ben saved my life. I was well on my way to being the most selfish person I knew. I cared about all the wrong things for all the wrong reasons. And the moment that little hand wrapped around my finger I began a brand new journey of self discovery. I can’t say that I let go of everything that was plaguing me – I still certainly have my issues – but I realized that raising this child was to be my guiding star.

And for two-and-a-half years, all was well. Then I was introduced to a beast named neuroblastoma and learned that it wanted to kill my son. There was nothing I could do but love and support him as he went through hell. But that maternal instinct of wanting to shred anything that tried to hurt my child, well, of course that never went away.

So we learned to celebrate mini-milestones: three months cancer-free, one year cancer-free…. And as we got more comfortable we celebrated the usual milestones: first lost tooth, first day of school…. We returned to some sort of normalcy. Just as we were beginning to breathe on our own without constantly looking over our shoulder, BAM! The beast was back.

I remember sitting on the bench at Ben’s school and crying to the school nurse. It was July. Ben was due to start back to school in one week but instead, he would be starting chemo. My heart was broken. Nurse Pam held me as I sobbed and reeled with the information of what Ben was going to have to endure: more chemo, more radiation, more surgeries, more pain, more missing out on normal kid experiences.

Here we are a year-and-a-half later. Ben is through the bulk of what a relapsed neuroblastoma kid goes through. He still has the painful 3F8 antibody to contend with but he’s back on the road to normalcy. Today, I dropped him off for his very first day back to school. Ben, Madeline and I walked over to school together. I dropped Mad at her line on the blacktop and took Ben – with the guidance of a fellow classmate – to where he was supposed to line up. He let me snap one picture of him before brushing me off and greeting his friends who were all too anxious to see him.

“Bye, mom,” he stated as a grin spread across his face, the onslaught of cheers emanating from his peers as they joined him in line.

My heart cracked wide open. For one, I was leaving my baby. We’ve been inseparable for a year-and-a-half. I was leaving him open and vulnerable to the cruelty that kids can be prone to. My own issues, I know, worried about kids making fun of him for being so tiny and frail. But when I heard his classmates cheering when they saw him, well, that cracked my heart open all the more.

Tears welled up as I walked away from him. It was so hard to not turn back and yell out “I love you, kiddo!” But I resisted the urge and scurried away. I didn’t want to be “that mom”, the one who embarrasses her kid to no end by saying corny things like “I love you”. So, I headed into the school office where I sobbed on Nurse Pam’s shoulder once again. She hugged me as I let all of my fears flow, just as I had about his cancer returning a year-and-a-half ago. The comfort she gave me brought me full circle because today’s tears were ultimately tears of joy.

Heartstrings. Today they were pulled even harder than the day he was placed in my arms for the very first time. I pray that he falls back in to being a normal kid with minimal effort and the loving support of his teachers and peers.

I pray – and pray some more.

Who knew this parenting gig would be so hard?