the drugs don’t work…and they didn’t cure cancer either.

Paxton,

Five weeks…that’s all we had left together. Memorial Day, last year, marked five weeks until cancer stole you away from me.

My flashbacks are flaring up again. Is that a possible condition: flashbacks flaring up? Like a case of hemorrhoids, arthritis, Tourette’s? I guess I could look into it. But, I don’t really care what any medical books have to say. These flashbacks are so very clear and so very real, that I have to dig my fingers in between the bones in my arms to bring myself into the present time and space. I need to feel the throbs in my arms to serve as proof that I am “here and now”, not “there and then”. Without the physical pain to ground myself, I float away to some ‘still-frame’ at Children’s Hospital and unwillingly follow the reel through the next five, seventeen, two hundred and twelve frames. I watch you disappear through two narrowing doors, after handing you off to a lady in a white jacket to be carried away to another surgery. I feel the snap of the blue gloves against my wrist as I prep to change your tiny diaper. I hear the humming and beeping of the monitors attached to your little toe. I see the cage-like crib, the fold-out-couch, the egg crates, the heavy curtain, the desk, the plastic non-rocking chair, the tables littered with empty bottles and styrofoam cups…I see the darkness. I hear myself think out the conversions of ounces to mL and squint at the scale, with every diaper change. These details are critical as they serve to accurately report your I/Os at the morning rounds. I look at the clock, I check it again. I reach for the nurses’ button to tell them they are 10 minutes late with your medications that can’t be taken late. I ask question after question, and answer a few hundred in between. I taste the stale air, the metallic suffocation, the charred helplessness. I carefully study every single person who walks through the door of your room. I concentrate on their body language, facial expressions, and word choice. I hear every word they say. But, I pay attention to what they don’t say.

No matter where they start – my flashbacks always end in the same place…where I accidentally left you: on a bed – one thousand times too big – for your tiny, precious body, in the NICU, wrapped in your yellow fleece blanket, wearing your grey and blue “Mamma’s Brave Guy” snap-in-front. I see your plump ruby lips, and your pretty pink cheeks. I watch myself kiss your baby face everywhere there is surface area. I feel your silky hair, and your soft skin for the very last time. As I memorize every last detail from the top of your head to the tips of your toes, I place “Little-Tiny-Bear” under your long, beautiful fingers. I sense your Daddy gently guide me away from you, and put me on the couch where, just moments before, we all sat intertwined as we collectively willed time to stop. I watch your Daddy go back to you one more time…and then another; I hear him whisper in your ear; I watch him snuggle your blanket around you, and tuck it gently under your chin; I see him kiss you over…and over again. I play this scene in my head, but it can’t be real. It wasn’t real then, it certainly could not be real now. The scene starts again, but before I watch it one more time, I heave myself out of bed, press my back against the cold bedroom wall, and dig my fingers into my arms all over again. I do this – “dig into my arms” routine – because it has been the only thing that keeps me from busting out the back door and running to CHW to get you. There are times, Paxton, that these episodes are so vivid I know you are still there – waiting for Momma to come back and get you. In these moments, I am not having a vision, a memory, or even a flashback…rather, a feeling so deep in my soul that I can’t possibly be imagining it. If I could make my way to CHW, I would find you peacefully waiting for me in the NICU. Nurse Renee would tell me you loved your bath, your diaper is fresh and your outfit is changed. She would be sure to have put on your Jordan socks and wrapped you in your potato blankie. She’d tell me not to worry, she loved holding you while I was gone…and, that my timing was impeccable because you were just starting to look for me. Just when I’m about to start for the door, I feel my fingers and thumb almost meet as they lift my biceps off my bones…and reality quickly ensues. No matter how far, how long, how fast I run ~ I will never get to you. You are gone.

The reasons for my ‘flashbacks’, ‘night terrors’, ‘panic attacks’ are plentiful. I’m pretty sure I’ve heard them all: PTSD…trauma…anxiety…depression…psychosis. I think they are all a bunch of b.s. There is no canned diagnosis which could appropriately define my symptoms. No diagnosis exists for the symptomatology of a mother whose only child was brutally murdered by a mother fucker named cancer at the age of 20 weeks and 1 day. Look that up in the DSM-IV.

That being said, over a month ago I decided to stop taking all the crazy ass medications those doctors, who couldn’t save you, prescribed me. I took all those pills because I was a shell of myself, and didn’t know my name – much less what I was supposed to do after my baby died. I was a shell of myself, with a hand tremor and a glazed over look in my eyes; I could barely inhale & exhale, much less realize my pill cocktail was more radio active than Kryptonite. I was a shell of myself who bought into the doctors’ alarm when they said my suicidal ideations put me significantly at risk. No shit I was suicidal. I probably still am. Far as I can tell, I will be for the rest of my life. What type of mother could watch her child die, be forced to carry on in a world without him, and NOT think (a hundred times a day) of a way to be reunited with her beloved baby?

Now that I’m in “recovery”, I see and feel things my salad bar of drugs numbed out. Most of which are not pleasant or uplifting – I should be so lucky. But, I feel them no less. The world is more vibrant and more alive…which is mostly annoying to someone like me living in the land of “My Baby Died”. Nonetheless, I feel things. Albeit these things consist mostly of pain, heartache, and a longing that can’t be fulfilled, I’m no longer numbing out the world. In fact, I am letting the world back in…one day at a time.

I have five weeks, Diddy. This time, it’s my life I am going to try to save. I have to see if I can save my life, because my life is all I have left. For the next five weeks, I am going to fight for me; strangely, a phenomenon I have never before considered. I am going to take every possible measure to get myself in a place where I am strong enough to look July 2nd in the face and give it the finger. In fact, I’m going to do my best to declare July 2nd as, “National F U Cancer Day”. It will never be the day you “…grew angel wings,” or “…went to a better place.” Fuck that ridiculous nonsense. You belong here with me; anybody who says otherwise is a brainless dickbag. My heart may be unequivocally broken, but my spirit is somehow still fierce enough to refuse to go down without one last rally. If I come through on the other side – cancer better start running. Your Momma ain’t never been a punk…but this “no drug” thing is unleashing a whole new level of bad ass. (At least this is what I am telling myself in the spirit of trying to make my five-week plan a success.)

This is absolutely the opposite of what I sat down to tell you about tonight. It’s quite bizarre, actually, that any of this came out. But, deep in my soul it must be what I needed you to know. The other stuff I have brewing in my head, can wait until tomorrow. Apparently, I needed to throw a “Hail Mary” to my Sweet Boy to let you know Momma’s in a whole new fight mode. I know it is selfish, as when we had five weeks left together I wasn’t able to save you. And, here I am with five weeks until “the day I don’t ever want to face again”, and I am asking you to help save me.

I am sorry, baby. I am sorry for all of this. I hope you know, that I will be okay either way. I just want to make you proud to call me your Momma. At least today, I feel like the best way to do that is to be okay and alive, instead of okay and living.

This conversation made me think of one of the most beautifully heartbreaking songs of all time. My favorite version is, of course, by Ben. It’s your lullaby for tonight. It is from your Momma…your #1 fan of all time.

Good-night, love bug. I miss you. I love you. I hope you are safe.

Stay with me, Sweet Boy.

xoox

Momma

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4 thoughts on “the drugs don’t work…and they didn’t cure cancer either.

  1. I wanted you to know that I read every word of this post & my heart breaks for you. I could never imagine your pain… Your words are so powerful I felt like I could see, hear, smell the same things. Please don’t stop writing. I believe your words will help other mothers out there dealing with similar pain. I pray that you get through these next 5 weeks with some amount of peace & lots of fire ❤

  2. On your mark, get set, go…..
    You are now ready for this endurance race honey, and I am so proud of you!!
    Remember…all such events need many volunteers coaches and support crews…use us, to help you, get you to this finish line.. with just enough energy left for the next event!
    XXO
    VBF

  3. Oh Danna,Please know that I am here for you and will help in any way I can to get you to the other side of the finish line. Gail

  4. You are the strongest woman I know! I have no idea how you have survived the past 10 months and 3 weeks! Your words are so powerful and leave me weeping for your sweet son and for you Danna! But at the same time I am so profoundly in awe of you and your strength! Your ability to express your thoughts, feelings and emotions into words is breathtaking. I know for a fact you are helping some other woman deal with her pain and at the same time I know you will come out on the other side! Your warrior son has a warrior Momma, that is what I know for sure!!

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