Burt’s Bees & “Little-tiny-bear” Kind of Day

Lil Diddy,

There’s one good thing about it being a weekend…besides not having to get up far too early for someone who falls asleep about 20 minutes before her alarm goes off. On weekends, I allow myself to use your Burt’s Bees Lotion on my chest (right over my heart). Having a scent of you with me all day, makes me feel a tiny bit closer to you. I would use it every day, except that Burt’s Bees made the only bad decision ever – and discontinued the particular lotion. Right after you were born, your genius Nana went gangbusters and bought every bottle she could find – on eBay – even though they were five times their original price. Today, however, is one of those days where I let myself bend the rule a little. I used your lotion on my entire body. I am extra sad today; therefore, I need extra more of you with me. I also stole Little-tiny-bear from your room and put him in my purse. Little-tiny-bear was a late comer to the scene. He arrived in mid-June, but you sure loved him. Not only is super soft and snuggly, he was just the right size for you to grab onto and hold in your hands. Little-tiny-bear stayed with you when I left your body at the hospital on July 2nd. He stayed tucked under your perfect, beautiful hands until Daddy and I picked you up from the funeral home…in a box. Little-tiny-bear was placed in the box right next to you, just as the funeral director promised.

I am still so mad at myself for leaving you at the hospital. I don’t remember leaving – I only remember I didn’t want to. I do remember making Daddy go back into the NICU room to get Giraffey and your potato blankie from Britta. I insisted he get your stuffed animal & a blankie – but, I didn’t insist he go back into the room and grab you. What kind of Momma thinks like that? I guess one who is having an out of body experience because her beloved son just died. But I still will not forgive myself for it. Another thing that tortures me about my behavior on July 2nd is that I didn’t bath your precious body – – one last time.  Even though your spirit had gone, your body was still there with me.  I should have bucked up, pulled myself together, and been a Momma. Instead, I asked your favorite girlfriend, Nurse Renee, if she could do one more favor for me and give you a bath. Of course she agreed. But, Nurse Renee is not your Momma. Nonetheless, she was the last one to give your body a bath. In turn, she put the last diaper, and the last outfit, on your precious body too. I am so sorry, sweet boy.

Daddy and I are going to run errands today. We are going to go in and out of the house, the car, and the stores without juggling 18 things that came along with transporting you with us. I hate the ease in which I can come and go from place to place. I long for the days when it was necessary to invoke super-Sheerah powers in order to remember, carry, and balance the bottles, diapers, blankets, bags, change of clothing, nuks, Giraffey, car seat…and my most precious cargo of all – you…everywhere I went.

I wonder what you would have done today to make me throw my head back, laugh out loud, and thank every angel in the world for sending you to me.

Thank you for being my baby. I love you. I miss you. I hope you are safe.

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Stay with me, sweet boy.
xoox,
Momma

It will take an eternity to break us

Diddy,

Ms. Whitney unexpectedly passed away the day before you were born. In a state of disbelief, our nation sought comfort through revisiting some memories of her glory years.  Whitney’s most infamous hits made a resurgence on the music scene.  It was a bittersweet experience.

That being said, it wasn’t really my fault that this song became one of “our” ballads.  Again, I apologize for streaming it through our iPad a little too often, and for singing it a little too loud.  It’s just that I was clinically delirious from falling head over heels in love with you…and, I just so happened to mean every single word.

Because it’s been far too long, and because I’m still head over heels in love with you, this is your song for tonight.

Stay with me, sweet boy.

xoox

Momma

 

Call my understudy – this role sucks.

Paxton,

I think today was the perfect day for me to have stayed in bed and boycotted my participation in the real world. I hated every second of today – starting with saying good bye to you while scanning your room and (yet again) being bombarded by my unbelievable reality …cruelly reinforced by the sight of your freshly-made crib, abandoned ‘size one’ diapers, and deprived, staged stuffed animals.

Because everything about today would only make me say swear words on top of swear words, I need to skip telling you about it. I made a promise to myself that I will keep my swearing to a minimum in each entry. At least, I promised myself I would try.

Over the weekend I solidified a starter-plan for your first birthday. I think it may have been harder than planning your memorial. Aunt Lala and “Magic Meg” did most of the planning for your memorial – i.e. “the most fucked up day that should never have had to happen”. I was in shock, merely watching myself in a (very bad) made for t.v. movie…as I blindly assumed a lead role, which I never tried out for, much less reviewed the script ahead of time. Thank goodness for Lala and the entourage of lovelies in her wake, for I know not how we’d have pulled one minute of that day together. At this point, the shock of your absence has worn off; but the reality of it is just not setting in. Regardless, I simply cannot NOT participate in planning my baby boy’s 1st birthday. Other than the day you were born, this is a day I have looked forward to for as long as I can remember. The “dysfunction” of planning a birthday for my only child, who was stolen from me (after being slowly tortured) by cancer…at the age of 20 weeks and 1 day…is not lost on me. I get it. It’s unnatural. It’s unbelievable. It’s unorthodox. It’s kind of like your 12 week old son being diagnosed with cancer. So, between you and me Paxton, I certainly hope people hold their judgements about my ‘psychological instabilities’ behind having a birthday gathering for my dead child for someone who gives a shit. I’m unwillingly trapped in a D-List version of my old life. If my behavior is so disconcerting that anyone feel it necessary to psychoanalyze my motives in group talk, or generate phone tree conversation to concoct the best way to approach me with their ‘loving concerns’…I urge them to take a less circuitous route – and call my agent. I cannot, will not, simply refuse to allow your birthday to come and go without proper recognition. You are my baby; you also happen to be my hero. Therefore, you deserve the very best. And, the very best you will get.

Daddy and I decided we would like to remember the happiest day of our life (the day you were born) by gathering all your special earth angels for an afternoon of quality fare, sweet melodies, fond memories, pure love…and, of course, some therapeutic libations too. As you watch us come together, I hope you will recognize we do so not because of any one of us has the strength, will, or desire to overcome the fact that you are gone. Rather, we come together – despite your absence – because we are collectively driven to remain united through the strength of your spirit, courageous of your soul, and purity of your love. Diddy, you alone have the ability inflict a change in this world. I have told you this before; yet, I realize that because I am your Momma, you assume I couldn’t possibly know what I am talking about. You just wait and see, little boy. Your birthday gathering will be beautiful – and powerful…much like you. Afterwards, when Momma proves, again, she knows ‘what’s what’, you and I will talk about other plans I have for that uncanny power of yours. Don’t worry baby, I will be with you every step of the way. You and I are in this ‘change the world’ thing together.

It is time for me to go up to bed. Daddy went up almost two hours ago now. I am beyond tired, yet dread ending the night – much for the same reasons I dread starting the day. I will walk in your room to kiss you good-night, touch your warm little head, pull the blanket you kicked off back up across your tummy, whisper in your ear how proud I am to be your Momma…and sneak as many kisses onto your cheek before (accidentally) stirring you awake (and getting in trouble with Daddy). Instead, I will be met by the familiar heavy silence and somber absence which greeted me this morning. Intellectually, I (almost always) know it’s coming. It takes my breath away nonetheless.

I miss you. I love you. I hope you are warm enough.

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Stay with me, sweet boy.

xoox

Momma

Lullaby, Baby.

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Paxton,

This song, particularly this version, has invoked a visceral reaction deep in my soul for as long as I can remember. For tonight, I’ll go to sleep believing it’s because you were singing it to me long before we (finally) became One. I will find you some day; I know right where to start my search, Lemon Drop.

Stay with me, sweet boy.
xoox,

Momma

I am on fire; Paxton is my fuel.

It is impossible to measure the impact childhood cancer has on its victims and their families by using statistics. But research funding decisions are often based on numbers. Here are some facts about childhood cancer; if you read these and are not shocked into motion – you can’t possibly be human.

~ Childhood cancer is the number one disease killer in children.
~ Childhood cancer kills more children per year than cystic fibrosis, muscular dystrophy, asthma and AIDS combined.
~ There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.
~ The National Cancer Institute’s (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.
~ 35,000 children are currently receiving (grueling and inhumane) treatment for cancer.
~ The causes of most pediatric cancers remain a mystery and cannot be prevented.

~ IN THE PAST 20 YEARS, ONLY ONE NEW CANCER DRUG HAS BEEN APPROVED FOR PEDIATRIC CANCER! ~

Cancer kills more than 2,500 children in our country every year. In the next 365 days, over 13,500 children will be diagnosed with cancer. I feel these numbers are significant. But, the potential market is simply too small to attract the attention of our private industry. Thus, the role of the taxpayer-funded National Cancer Institute (NCI) is especially critical. While the NCI controls billions of taxpayer dollars, it releases less than 3% of its resources to specifically help children with cancer. (Ironically, some of the most significant advances in the battle on cancer in general have been made by studying childhood cancers.)

I find these statistics to be stunning. I find these statistics to be offensive. I find these statistics to be unacceptable. My sweet boy is anything BUT a statistic.

I’m on a mission today. I am pissed today.

Paxton, you should not be gone. I will find a way to make the statistics surrounding childhood cancer improve. I will insist that we soon live in a world where eradicating childhood cancer from our society tops our politicians’ agendas instead of banter over taxes, guns, and “forbidden” love. I will not be quieted; I will not be intimidated; I will not be ignored. I will see to it that our voices are heard – yours and mine, Diddy. Take my hand, we’ll make it I swear.

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Stay with me, sweet boy.
xoox,
Momma

Hating six months without you…

Little Diddy,

There is so much to tell you, but it all ends the same…every minute, every moment, every breath of the past six months has hurt. I know, however, that my pain is nothing compared to all you endured. Despite the relentless stream of pain, the past six months have rendered me more in love with you. Nothing else, however, is right. My brave, strong, beautiful, perfect Peaceful Warrior, I am so very sorry. I am sorry you are not fast asleep in your cozy crib, with Giraffey tucked safely under your arm (or leg). I am sorry you didn’t get a bedtime story – – or two. I am sorry you missed your first Christmas: the snow, the lights, Santa, sugar cookies – your Elf on the Shelf (who remains unnamed). I am sorry you haven’t had me bundle you way too warm, on “not that cold of a day”. I am sorry you haven’t woken up in the middle of the night from teething, or just a soaking wet diaper. I am sorry you didn’t hear me sing to you in the car this morning after becoming a bit overexcited from the mere glimpse of your adorable face in the rearview mirror. Most of all, I am sorry one million times over that I failed to protect you from the pain, the fear, the torture that was your unwelcome, yet unwavering, guest. This notion will continue to haunt me throughout every single day I exist without you.

Today needs to be over. I hate the 2nd…I hate the 12th too…and, I also happen to hate everyday in between. Have I mentioned lately, I hate every second without you, little man? I will be more positive next time I write. But, I am tired; my heart hurts; my eyes sting. Today mostly needs to be over because the end of the day is met with night. Nighttime is a (socially acceptable) time to sleep. I look forward to sleep these days – simply because it presents the possibility I may find you in my dreams. You aren’t there very often. I understand. It is not your responsibility to make Momma feel better. All the same, it makes me happy when you stop by. I have memorized each ‘frame’ of the three times you’ve come…down to the detail of the precise shade of background colors.

I hope you are happy. I hope you are warm. I hope you are safe.

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Stay with me, sweet boy.

xoox

Momma

This Little Light of Mine…

The first song I sang to you was This Little Light of Mine. Very late in the night of February 12th the instrumental version began to play through the Pandora station I had streaming on our iPad. As the rest of the world seemingly slept, we snuggled as close to each other as we possibly could, and stole a piece of the night. I held you against my chest and rested my lips gently on your perfect head. I could not believe I was actually a mom…I was really holding onto my very own son. In efforts to convince myself I was not lost amid a dream, I began an internal chant: “He is real.” “He is real.” “He is real.” My tears fell softly atop your precious head as we exchanged some of our first secrets. The background music prompted me to tell you some of the thousands of things I eventually wanted you to know, including: …”I will never let anyone or anything put your light out, baby. I will do my very best to ensure you grow to be proud, confident, independent and strong – so your light shines bold and bright. I will love you so hard, and so unconditionally, that no matter where you roam or how far you go – your light will always guide you back home.”

Friends…Family…Beloved ones, please help Paxton’s light shine for all the world to see. More importantly, let Paxton know we see his light, and that it – indeed – shines on.

This Sunday, December 9th, from 7:00 p.m. – 8:00 p.m., The Compassionate Friends support group has organized a Worldwide Candle Lighting ceremony. Now believed to be the largest mass candle lighting on the globe, the ceremony unites family and friends to honor children who have passed away, at any age, from any cause. A virtual 24-hour wave of light will move from time zone to time zone across the globe. At 7 p.m., local time, hundreds of formal candle lighting events will be held, and thousands of informal candle lightings will be conducted in homes. Families near and far will join in quiet remembrance of their child(ren) who were taken too soon.

Watch for the light, sweet Paxton. Know you are loved; you are missed; you are remembered…and, most of all sweet baby, you are never alone. I hope you are safe.

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Stay with me sweet boy,
xoox
Momma