songs. signs. and a very silent storm.

Paxton Bowe,

Yesterday, I spent the better part of the morning driving through the city, soaking in the beauty of newfound surroundings, getting lost and then getting found. Normally, the times I was lost would have frustrated me and (inadvertently) lead me to swear at idiots who cut in front of me, and whip-off even bigger idiots who insisted on driving slow in the left lane. (Right after conquering cancer, I’m coming after slow-left-lane drivers.) However, you and your Busha keep me both comforted and amused. Calmed into in a blissful haze, I continued to explore. In the confines of four hours, on several different radio stations, I heard: “Somewhere Over the Rainbow”, “What a Wonderful World”, “Brown Eyed Girl”, and “Yellow”. Each time another song came on I called your Lala. With each call, she broke into her trademark, barely audible giggle. Through a tear-crackled voice she’d proudly proclaim, “He’s such a good boy, DD.” Yes. Yes, you are Diddy.

Knowing Lala was in the loop, you made sure to include her in the fun. Just when I thought you were done for the day, Lala called to tell me “Brown Eyed Girl” just came on the radio in her car all the way over in Milwaukee!

However, the most profound “musical moment” happened as I was finishing up my evening run. A song titled, “Storm”, by Lifehouse came onto my iPhone. I don’t know how it popped into my queue; I am certain I’ve never heard it before. In fact, I really don’t recall ever adding any songs by Lifehouse onto my iTunes. As the lyrics played, the world around me came to a standstill: my body paralyzed: my insides numb. The only thing that seemed to have any movement were the chills that rose to the surface of my skin, and the tears that streamed down my face.

You sent me a perfect compilation of songs, baby love.  Now that I know music is  one way you tell me you are with me, the melodies filled my broken heart with remnants of you. Like most things which involve having to parent you from so far away, receiving the songs made Momma equal parts happy and sad. Happy you are sending me signs, even more happy you are with me. Sad because you shouldn’t have to ‘send me signs’ to let me know you’re near. You should amble over to me, outstretch your little arms, and hop right up into my lap. Nonetheless, I enjoyed our day filled with secret messages. I think I smiled more during that four hour excursion than I have in the last four days combined. However, the song by Lifehouse has rested heavy inside of my heart. How it got on my iPod and came into rotation – on all days – seemed too serendipitous to be merely a coincidence. I believe it was to provide me with a vehicle to reciprocate your beautiful efforts, and send you a song.

If art were ever to imitate life, mine is reflected most perfectly by this song. Much like having you, and subsequently losing you – this song is one of the most painfully beautiful things I’ve ever heard.

This is your lullaby tonight. May the lyrics fill your heart with reassurance that there is nothing I would rather do than be exactly where you are. Nothing I rather have than you wrapped in my arms. Nothing I would rather hear than your squeaky voice. Nothing I would rather see than your adorable face. Close those baby blues and fade into a peaceful slumber – Momma is right here.

I miss you. I love you. Sleep tight.

Stay with me, Sweet Boy.

xoox

Momma

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No~Thank You, May.

Paxton,

May is here. I cannot do May.

I said those words tonight. I said them over and over. I am sorry if you heard them…if you heard my voice grow weaker with each, “No, no, no,”. I am sorry if you saw the pain in my eyes, the hot tears that ran down my cheeks. When my “no’s” fell silent, I blindly stared out your bedroom window. My sweaty palms slipped off your changing table, and wrung themselves tightly together. In my head, I begged no one in particular, “Please make May go away. Please bring him back. Please. I cannot do May”.

May is when you stopped eating. May is when you couldn’t sleep some days. May is when you couldn’t stay awake other days. May is when you were admitted into the ER. May is when you became a patient on the H.O.T Unit. May is when Room 582 became home. May is when you were assigned the largest team of doctors in the history of pediatric Oncology patients at CHW. May is when you had three (out of five) surgeries. May is when you were diagnosed with Neuroblastoma…then with Leukemia….finally with Sarcoma. May is when you started chemo…on Mother’s Day. May is when you had, and ultimately ended, your 10-day “smile-drought”. May is when the end began.

For the next seven days, I will recount every hour we spent together before we crossed the one-way bridge into the barbaric world of Childhood Cancer. I will recall the endless trips to Target to buy ‘another’ new bottle, three different nipples, Vick’s Vapor Rub plug-ins, a medicine dropper, and Pedialyte. I will read, and re-read the Gold Binder of “Paxton’s Day” logs in which I insisted Nana, Papa and Kim Lueder record detailed notes of your eating and sleeping patterns. I will think about the night I gave you a bath – and suddenly realized that the water may be a little too warm; I will then feel my heart sink as I picture you simply staring back at me with a look of quiet exasperation. I will remember watching my miracle boy in his peaceful slumber for “…just one more minute” – before waking you on Thursday morning. I will see the vision of you intently watching Nemo on the computer at the gym through weary and tired eyes. I will remember you and I fumbling our way to Urgent Care Sunday afternoon, as I did all I could to appease you as we waited for over an hour, only to have some inattentive, arrogant doctor tell me you had “Hand Foot Mouth Disease”. I will remember you waking up every few hours throughout the night on Friday, Saturday, & Sunday….not to eat…just to be held. I will swear at myself over and over as I wonder how I didn’t figure out how very sick you were. I will ask myself a hundred more times how I possibly missed all the signs. I will regret not staying awake all day…and all night…not giving up one moment with you. I will call in every favor I have to just in case this can still be one huge misunderstanding. I will give everything I own to be stirred awake tomorrow morning by the sound of your “Whoo.Who.”

Achhhk. May. Spit.

But tonight it is still April. I will hold onto April until the sun steals it from me. I will thank April for giving me a myriad of “Non-Childhood Cancer” memories. We did so many special things in April; we embarked on so many secret adventures: just me and my American Express Baby. “…I’ll never leave home without you!” Do you remember when I said that to you as I strapped you into your car seat to set out on yet another one of our outings? You pulled your smile back so big; your eyes filled with laughter and your arms circled with excitment.  You’re reaction made Momma let out a shot-gun laugh and drop her head onto your little tummy. That is such a great memory. I replay it in my head more often than you know.

Yes, it’s true. Momma has a fierce storm brewing inside her bones. May started it. But hasn’t let up since. When the storm will rise to the surface of my skin is no one’s guess – and everyone’s fear. All I know is it will not be tonight. Tonight I am going to close my eyes and play back all the bliss of April. As I do, I will imagine you sleeping in your bassinet – right by my side, breathing the same air, feeling the same breeze, hearing the same sounds, sharing the most sacred times, stealing the same love…which saturated our home.

As Dave would say, tonight I will “sleep to dream (you).” If we do not find each other in Momma’s dreams tonight, you need not be afraid: “space between” us does not exist. I am always holding your hand, and forever carrying your heart.

Trust me, My-My. You and me…we are gonna be okay. Momma’s got this.Trust.

Stay with me, Sweet Boy.

xoox

Momma

14 months. numbness. and (involuntary) survival.

Little Diddy,

It has been too long since I’ve written. There is no excuse – other than the fact that this numbness thing has made stringing multiple sentences together an elusive feat. Everyone who knows me could attest that I express the contents of my heart best through the written word. I realize that talking proves to be the most efficient and effective form of communication for most people. Apparently, I am not most people; at least not when I’m expected to express emotions by talking. So much of what I want to say remains unvoiced when I have to rely on my mouth to keep up with my brain. (Momma is a quick thinker. But when matters of the heart are at play, the right words don’t always catch up with my speedy brain…much less find their way out of my mouth. Ironically, in situations that it’d behoove me to be at a loss for words – thoughts fly out of my mouth all too quickly. It’s gotten me into trouble every now and again. Largely because the things that fall out of my mouth, when not speaking with my heart, happen to include the “F” word…usually more than once. And also because most people don’t appreciate the versatility of the word as much as I do.)

In hindsight, writing to you proved to be a helpful way for me to process my grief. I guess it took me until January to begin writing because that’s when my grief-induced numbness started to wear off. Each time I wrote, little pieces of my heart grew closer together. Uniting my scattered, yet most sacred, thoughts into a coherent and heart-felt voice allowed a tiny sliver of my soul to come back to life. Given I had lost my beloved child, to a gruesome and horrific disease – just six months prior, I don’t think my emotional paralysis was uncommon or unacceptable. As it turns out, others thought differently.

Two months ago a deep-freeze-Novocain-shot-to-the-heart-type-numbness returned. This round being induced by a choice, not a disease, feels entirely different…yet strangely familiar. Apparently, numbness is how I spare myself from pain so profound that, if absorbed, it would kill me. I never understood how Aron Ralston, the hiker who got trapped under a boulder for 127 hours in the mountains of Utah, managed to severe off his arm to dislodge himself and save his life. Now it makes perfect sense. Mr. Ralston cut off his arm; I cut off my feelings. Survival: I guess it is an involuntary reflex after all.

I am glad I survived until today, because today you would have turned 14 months. Before I even opened my eyes this morning, I knew it was the 12th. I knew it was 14 months. Instead of letting my eyes give way to the tears which all too often push their way past my lids and down my cheeks, I closed them a little tighter. As I did, I was met with a vision of you so vivid that if I’d reached inside my eyes, I could’ve grabbed onto you. You held onto the railing of your crib as you bounced just high enough to make me nervous…but too excited to make you stop. Across your sweet face spread your trademark, semi-lopsided, contagious smile which was so fierce that it pushed your cheeks against the bottoms of your baby-blue eyes. You had on fuzzy pj’s – – through which your diaper, being extra squishy, made your dupa stick out a little further than the rest of you. The babble you uttered was purposeful in nature – – as you were luring Momma to your room to swoop you into my arms for a good-morning kiss and love-packed squeeze.

I could have watched you all morning. But just as quickly as you came – you were gone. When that happens, especially in a semi-sleep state, I am still not sure if you actually came to visit, or if I simply conjured up a desired reality. Either way, I feel as close to you as I can possibly get – which makes my heart smile.

I eventually willed myself out of bed. I forced myself into the shower. I put one foot in front of the other. I set out to execute the motions of the day. But I held that vision of you so steady in my eyes that I can’t say for sure I ever saw the road as I drove through the dark, rainy morning. I was snapped out of my trance by a message from someone I thought I may never hear from again. The gesture alone was beyond what I could have asked for…especially today…especially in that very moment. I am certain you were behind that too, Sweet Boy. You always find a way to remind me that we are together in this shit storm of life.

For now, Momma has to go to sleep. As always, I will look for you in my dreams. Wherever you are, and wherever you roam, I hope you can feel my love – – from the top of your precious little head all the way down to your tippy-tippy toes.

...the giving tree.

I am so sorry you got sick. I am so sorry I couldn’t protect you. I am so, so sorry for all of this.

I love you. I miss you. I hope you are safe.

xoox,

Momma

11 months…and my bad dreams are better than my brutal reality.

Paxton,

It’s hard to believe it was just eleven months ago today that you made my heart, my soul, my world whole. It’s all hard to believe.

I had a dream last night. It was a perfect reenactment of the day you were born.  I was in room #4, with Daddy, Lala, Nana, Grammie…and, even nurse Jenny. Except, this time, when you came out the doctors and nurses wrapped you up in those little, white, baby blankets and carried you away.  They didn’t let me hold you. They didn’t even let me see you.  I tried to get out of the hospital bed to run after you, tried to scream your name, scream for help. I couldn’t move. I couldn’t speak.  Suddenly, everyone else was gone too.  I could hear their voices; but I was alone.  Not surprisingly, the only person I wanted to find…needed to get to, was you.  In a panic, I couldn’t get myself unhooked from the hospital bed.  (I know those beds like the back of my hand. I spent so much time strapped into one when we were there together in late November, early December – hooked up to monitors, belts, and alarms. All eyes were on you, Paxton; everyone was watching and tracking you…no one more closely than me.)  The whole bad dream scene startled me awake. For a brief moment, I was actually relieved to realize it was a dream. The next moment, however, I realized you were still gone.  Hot tears began to stream down my cheeks. I wanted to run down to your room, just to be sure. But, the pain in my heart reassured me I wasn’t dreaming anymore.  Somehow, my real life is far more disturbing than my bad dreams now.  In attempts to anchor myself, I did the only thing that helps me survive those long, dark, frightening nights: I rolled over and held onto Daddy as tight as I could.  Sometimes, when I concentrate on his breathing, I am able to cry myself back to sleep.  Thankfully, last night was one of those times.

I spent most of the day trying to erase the dream from my head. I didn’t tell Daddy about it.  It’s obvious the dream is a parallel with how I amble through each day. Therefore, I didn’t find the need to psychoanalyze it.  You were here. You were real. You were mine. Without permission, right under my watch, cancer stole you out of my arms. I couldn’t run after you; I couldn’t scream for help; and, despite the army of love surrounding me, I am alone in this pain…which is holding me hostage. Most of all, I ache to be with you.

I wish I could have seen your face, sweet boy.  I won’t stop looking.  I know you will come visit when you can.  And, I will be here. I will always, always be here.  Say the word, and I will come running. Not a dream, not 100 straps and alarms, not an army, not even asshole cancer will stop me this time.

I miss kissing you on the very inside of your neck.  I miss everything else too.

Stay with me, sweet boy.

xoox,

Momma

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