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

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the world is insane. i’m just mad.

Paxton,
I am currently donning my pink (PINK!) hoodie…complete with hood up, and tied so tightly that the only thing exposed are my swollen, tired eyes. Only your Momma would be freezing cold on April 21st. I guess I will always be the biggest freeze baby in all the land. I still think you were “coldie” more often than not too – even when others would argue you were fine…I’m pretty sure you had your Momma’s blood. (I apologize for the few times I accidentally made you super-sweaty on those walks when I snuggled you with one too many blankets. I was just making sure.)

I am sitting in your bedroom, in our glider, with your little teal pillow propped underneath the computer. The ‘just right’ pillow positioning is both traumatizing and comforting. I can remember exactly the way you and I needed to be ‘situated’ both here in our glider, as well as on the couch with your boppy – leopard pillow – red pillow combo. Of course, it all makes perfect sense now why it hurt your tiny little body so much anytime Momma made even the slightest move. I can’t talk about it in detail…because doing so would make me puke. All the little signs continue to fall into place. Just when I think I’ve thought of them all, another one pops up: like tonight, as I instinctively resumed the “glider teal pillow arrangement”. I will never forgive myself for allowing anyone to talk me out of my gut instinct. I’d do anything to rewind time and be a stronger-willed Momma. I would force someone to listen to me…not simply hear me. If I needed to, I would scream at the top of my lungs, “No…I am not a neurotic, hyper-sensitive, first time mom. No…I am not going to keep a god damn journal to document on paper what I am telling you right now. No…I am not going to bring him back tomorrow if he doesn’t ‘turn the corner’. What I am going to do is stay right here, holding my son against my chest ,while you figure out what the fuck is wrong.” I am so sorry it took me too long to say all of those things.

On top of being cold, and sad, I have officially decided the world is insane. This weekend sealed the deal, Diddy. The more people I encounter, and the more knowledge I acquire…the more convinced I am that the entire universe…at least my corner of the world…well, minimally my street…is completely twisted.

Go away - except Diddy.

One year ago tomorrow marks my first day back to work after my 13 weeks of bed-rest + 10 weeks of maternity leave…totaling 50 weeks and 1 day of completely unseparated time with you. Dream come true.

I remember how phenomenally scared I was to be away from you for ‘an entire day’. Grammie slept over to make the transition smoother for Momma. But it didn’t work. I did not sleep the night before. I could not make myself leave when it was time to go. Just as I headed for the door, I was compelled to write you a letter. Even though she was anxious to have you to herself, Grammie let me write in silence. Knowing it’d make me even later, I insisted I take the letter up to your room and put it on your dresser. I asked Grammie to read it to you when I was gone, so you would’t go too long without “hearing” from me. And she did…that Grammie of yours is a spoiler. I did not do a single, meaningful thing at work that day. I did not concentrate for two consecutive seconds. I did not make it more than one hour without calling home to check on you. I thought about you every.single.second. Above all, I missed you terribly.

Nothing about tomorrow will be different while I am at work. Everything else will be; starting with the fact that I can no longer rush home, scoop you into my arms, breathe in your sweet smell, and whisper in your ear how very much I love you…and everything else thereafter too.

I miss you so much it hurts my tummy. I hope you are warm enough.

Stay with me, Sweet Boy.

xoox,

Momma

two precious, miracle, blue-eyed boys…together forever.

Sweet Boy,

Tonight I am short on words, but not on tears.

When Bradan’s Daddy contacted me with the news of his baby boy’s passing, I was instantaneously transported back to July. I remember those days with such pristine precision, it seems as if it were yesterday: the suffocating grief, the overwhelming fear, and the pure and unrelenting love…which was all around. At the same time, given how drastically life has changed since you left, July feels like it must have been a million years ago.

Upon Bradan’s arrival, I see you reaching out for his hand. I imagine you holding it tightly and assuring him that he need not be afraid. I believe this because even in the ‘highest layer’, I know you are the bravest litte warrior – with the kindest heart, and most inviting smile.

Both of you precious, miracle, baby boys – with eyes as blue as the sky – belong here with your Mommas and Daddies. I have no doubt every angel would agree that children are meant to outlive their parents. Period. Because we cannot be together, I need you to remember this part of our forever-and-ever-pact: hold onto your angel (the one with the biggest wings) until Momma comes for you. Hold onto Bradan and to the other boys and girls who cross your path too. Most of all, please hold onto my love. And always, always know that you are not alone.

Close your beautiful blue eyes and sleep peacefully tonight, my love; Momma is right here.

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

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