Back in NYC

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)

I don’t know what day it is

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.

Milestones

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?