jedi mind tricks don’t work on days like today.

Diddy,

Tonight, as I was brushing my teeth before bed, the doorbell rang. Standing at the front door was a strange man, who asked if he could borrow some eggs. Before I could answer, and tell him I don’t have butter, sugar, or flour – much less eggs, he grabbed me and threw me in the back of his rusty van that reeked of peed-soaked carpet. He bound my arms and legs and shoved a gag in my mouth. He drove and drove until we reached his rundown shack, smack in the middle of nowhere. As he threw me onto the cold ground, he told me I’d be his bitch forever and ever.

Ok. So that didn’t actually happen. But I conjure up scenarios like these to do my best  to put things into perspective. Because being kidnapped from my own home, shoved into the back of a smelly van, and forced to be a creeper’s sex slave would be just a little bit worse than the day I had today. My attempts to pull Jedi mind tricks on myself don’t work, because even though I logically realize that my day is better than someone’s who is held captive, or someone’s who lives in poverty-stricken, war-ravaged conditions, and is definitely better than someone’s who has the great misfortune of working at craft store for a living – I still hate every, single day here in this life without you.

Today was especially shitty because it was the first day of school. For most parents, this is an exciting time of year – marked by photos of their happy children, on the front steps of their happy homes. For most parents, the start of a new school year is a welcomed change. For bereaved parents, back to school bonanza does an exquisite job of displaying signs of torture everywhere. Over-sized backpacks, school supplies, yellow school buses, car drop off lines. Everywhere I turned, I was faced with painful reminders of more ‘firsts’  that you will never experience. It was one sucker punch after another.

It’s too much sometimes. By sometimes, I mean almost always. It’s especially challenging because, even if I tried, this annual occurrence is not only monumentally painful, it is one which I simply cannot avoid. I am a teacher, for the love of Jesus, Joseph and Mary. So not only am I smacked right in the face by the back-to-school torment; I have to actively participate in the god-forsaken event. Part of my job is to be the ‘welcome wagon’ to all the eager, awkward in the most adoring way, teenagers – with sun-kissed skin, donning their spanking new back-to-school outfits. But, behind every ‘welcome back’ smile there is a floodgate of tears threatening to tsunami my classroom at any given moment.

Everything I wished for is not. And the brutal truth of it burns. It burns new holes in me – it  burns in the old places, that I foolishly thought were repaired, too. It aches in places I didn’t know could ache. It screams in a pitch that reminds me of the wretched moment my life changed forever. This is one of the many realities of being a bereaved parent that no one talks about….milestones – that should have been – which rip open the scabs of buried grief and create ones of new grief – all at once, and all over again.

And, boy, do you fucking bleed.

I know you wouldn’t be starting school this year. In fact, I know your first day of Kindergarten wouldn’t be for exactly three more years. To be precise, it would be in September of 2017. But that doesn’t stop me from imagining what it would be like to be able to take just one picture of you starting school. A toothy grin, or a goofy face. A perfectly matched outfit…that I laid out for you the night before. Or, a perfectly mismatched one…that you insisted on choosing yourself. Blurry or in focus. Sunshine or rain. Our front steps, or the front steps of your new school. I’d take it. Just.one.picture. Because just one picture would have given us five more years together. Five more years to kiss your sweet head. Five more years to hear your voice. Five more years to tuck you in at night. Five more years to memorize every nook and cranny, and idiosyncrasy that make you perfectly and uniquely you. Five more years to watch you run wild and free.

If only I could walk hand and hand with you to your classroom, or as far as you would let me before you wrangled your grip free, and bravely reassured me, “I’m okay, Momma.” If only I could be annoyed by the lengthy back-to-school shopping list. If only I could have held back the tears of wondering how you got to be my ‘big Kindergardener’, as you excitedly rushed into the day ready to partake in the rite of passage children across the land look forward to experiencing. If only I could post your (adorable) picture on my Facebook wall. If only I could race home to greet you, with an excited smile and an enormous hug, at the end of your very first day of school. I would give my whole life to experience just one more minute. Just one minute longer is always and forever the cry of a bereaved Momma.

Every ‘first day of school’ makes me sick. And it makes me sob. I know most people have no idea these thoughts and feelings flood my soul. You never having a first day of school is a distant thought in their minds. It is far too ‘long gone’ to stay in the present. Especially in the frenzy of their beloved children’s back-to-school hoopla. For the rest of the moms, time moves at warp speed. But for a bereaved mom, time stands still.

So here I stand, the world around me paused at a screeching halt, with one foot in the life we once had, and one foot in the life I now have. With a broken heart and a tortured soul…wondering, imagining, longing for all what could have and should have been. Here I stand, with wobbly knees and tired, tired legs – straddling time and space.

And although my life is not as bad as it could be, it is still so very hard to live this life without you.

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I would’ve always packed you the very best lunches.

Stay with me, Sweet Boy.

xoox,

Momma

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a fragmented sea of love. because you’re missing from everything.

Hi Diddy,

I did my best to keep myself as busy as possible today. With no responsibility, no schedule, nowhere to be, and no one to be any where in particular with – this proves more challenging than I can sometimes manage.  After running all of the errands I could possibly think of, I starting heading towards home. As I approached my house, which loosely resembles a place I once knew as home, I kept driving. I drove, and drove nowhere in particular. Somehow I reached the lakefront and instinctually pulled over.

I looked out into Lake Michigan as far as I could see. My eyes took in the sights of the water meeting the horizon and everything in between: a flock of birds flying in v-shaped pattern, sail boats gliding atop the crystal blue waters, a man walking his dog, an old couple walking hand in hand, and a woman pushing a toddler in a stroller. Yet all I really saw was a world continuing to turn on its axis and creatures, big and small, continuing to live. The audacity of it all – despite the fact that my baby got cancer and died – caused me to scream at the top of my lungs. The echoes of my primal scream will always leave me more scared of myself than a normal person could ever understand. It is a sound that remains foreign even to the very body which produces it. I haven’t screamed like that in awhile now. I guess I needed to release some of the pain which was compiling inside of me before I burst into a million pieces. I may not scream as often as I should, but I still cry everyday. Sometimes in the shower when I have to face another day without you, sometimes when I’m trying to fall asleep and can’t kiss you good night – and don’t even know where you are, sometimes in my car when I am suffocated by the booming silence of your absence. Other times, in the middle of doing absolutely nothing, the tears start pushing on the back of my eyes – forcing me to cut and run somewhere that I can let them fall without having to answer anyone when they inquire, “What is wrong?” Everything is wrong.

After my ‘primal shit show’ for one, I did what I usually do when I don’t know what else to do. I go find your cousins.  One of them always finds a way to mute my sadness for at least a little while. When I walked in their house, the three little people who have saved my life a million times over greeted me with overwhelming excitement and gestures of love I know will only last a few more precious years. The time will come (far before I’m okay with it) when their crazy aunt who comes and steals kisses from them in exchange for candy and gum will be replaced by best friends, girlfriends/boyfriends, teenage priorities – and I’ll have to suffice with a mere glance in my direction, and a barely audible, “Hey DD.” For now, I will suck up their good lovin’ with every cell in my tired body.  

As if it were a perfectly normal query, Sennet said, “DD what’s your favorite song in the whole world?”  Taken off guard by his question, and enamored by the fleeing innocence he intermittently projects, I stammered, “Uhhh. Geez. I’d have to think about it, Sennet.” Alina chimed in, “Try?…just because it burns doesn’t mean you’re gonna die…you gotta get up and try, try try.” Just like that a lump started to rise in my throat. I constantly worry about the emotional trauma these little people have endured because of cancer, because of me, because of the people I let them fall in love with only to have them be ripped from their lives.  They should not know about the pain that has become commonplace in their once care-free hearts. No child should. Most certainly not these babes.  My 7 year-old niece shouldn’t know that Try could very well be her aunt’s life theme song.  Before I could compose a response, Sennet countered, “No. Yellow.”  And the three of them began to sing, “…look at the stars, look how they shine for you…and it was all yellow too.” It was the most heartbreakingly beautiful sound I have heard in a very long time. Luckily, I was safely tucked away in the bathroom – where my tears fell silently into the sink. As their serenade faded your best buddy, Finn, confidently proclaimed, “Well yeah, Yellow is DD’s favorite song. It’s about Paxton. And Paxton is her favorite per-shun.”  The three of them quickly concurred. And so it was settled.

It took all my strength to push the tears and the vomit back down into their hiding places, and come out of the bathroom before it was ‘too long to be there’. I wanted to collapse on the ground in between the sea of love created by these three little humans and tell them to fall asleep with me until we woke up in a different lifetime. A lifetime where you are among us, and there are four little humans laying among me. But, I knew I couldn’t do that.  It would break your cousins already vulnerable hearts. So I put on my fake smile and crouched down to be eye level with them and asked about Mindcraft and Plants and Zombies, sleepovers and Safety Town. All the while, I sustained a parallel conversation in my mind with you. The one where I apologize that you are not here too, that I carry the guilt with me every day for not protecting you, that I worry every second of the day if you are happy, safe, and warm enough, and that I hope against all hope that someday, we will be together again.  Meanwhile, I held the smile on my face for the picture I know will be taken by those three little minds. I will forever wonder how in the world I can look happy, if only in a picture inside the mind of a child, when I am still so broken, sad, and shattered.  

It truly is amazing…the indomitable nature of a human soul.

I miss you. I love you. I hope you are running wild and free.

 

Stay with me, Sweet Boy.

xoox

Momma

june gloom. and i really can’t stop throwing up.

Paxton,

Momma has been feeling like a giant pile o’ poo lately. It’s the type of ‘don’t feel good’ where I sincerely struggle to get out of bed every morning. When I finally force my feet to the ground, and my legs to take consecutive steps in front of the other – I go into auto pilot until I make it into work. Once I arrive, I have to fight to stay upright and continually wonder if “today will be the day” I finally collapse on the ground and give up. Ambling through every day like this is just another part of my new ‘normal’. A ‘normal’ that only a bereaved parent could possibly understand. Anyone who can’t relate to my ‘normal’ – should occupy their spare time thanking the sun, the moon, and the stars for being the lucky ones.  Not understanding my ‘normal’ means they haven’t had their child die in their arms.

I guess I took a giant step back in my grief, because my body feels as empty, yet mysteriously heavy, as it did in the initial weeks following your death. I thought I had finally made it past the darkest of dark places; but I should know by now that this grief will continue to comes in waves for the rest of my life. When I least expect it, the riptides of grief come crashing to around me and attempt to pull me under. With each return, the undertow becomes harder and harder to fight. Somewhere along the way, someone very near and dear to me shared his painfully keen insight on grief. He said, “Believe me, sweetheart, the grief will never go away. It’ll come in waves for the rest of time. It has to come in waves; if it came all at once, no human could ever survive its toll.” He couldn’t have been more accurate. It will come as no surprise when I tell you he is a bereaved father. Only a parent who has lost a child could know of such unrelenting and unceasing pain.

Maybe I am feeling extra sad because another school year has come and gone. And, now I’m facing what I know will be another long and lonely summer without you. I can’t help but imagine all the things you and I would do together to fill our endless summer days. Momma and Diddy: a Dynamic Duo.  This summer, in particular, would be especially fun-filled. Two and a half – a perfect age for all types of perfect mischief. How in the world will I survive another summer without you? Why can’t we be together running wild and free? How did cancer ever end up inside your tiny body? Why didn’t I take you into the doctor sooner? How didn’t the treatment work? Where are you now? When is somebody going to end this sick fucking joke and bring you back?

I still think that, Diddy. Even after all this time, I have moments when I actually think someone is going to show up at my door and hand you back to me. I want to scream sitting here on my couch, staring at my favorite picture of you – so alive, so animated, so happy. Even your eyes are smiling at me. As I look into your blue eyes, for a split second, I wonder if you were even real. The life I knew with you seems so long ago. Another lifetime ago. In the deepest parts of my soul, I know it was another lifetime. I know that lifetime is gone. But, I still try to cling to the moments I had with you. As time goes on it gets harder to remember. My old memories are being replaced by new memories: as if they are in competition with one another. I promise you this: neither are going to win this fight.

I want my old memories, especially the good memories with you, more than anything in this world. The good memories are so hard to recall. Sometimes remembering them is just as painful as remembering the bad, cancer memories. I wish I could say I have found just a little peace with all of this, but I have not. I wonder how parents who’ve watched their child die, find peace. Do they ever truly find it, or just fragments of it here and there? Feeling at peace about you dying is never going to be reality for me; and that’s fine. At least I’m being honest with myself and what life feels like to continue in this life without you – which is still hell on earth every.fucking.day.

I think I am going to throw up now.

Thank you for being my eternal sunshine.

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Stay with me, Sweet Boy.

xoox,

Momma

She is here. But part of her is elsewhere for eternity.

Paxton, I made it through the fuckwad days in May that I hate so much. I went to work on May 8th. That was  a major accomplishment in it of itself. Last year, I willed myself a million times over to die in my sleep. I didn’t get out of bed until the girls showed up, dug me out from underneath my pillows and held my hands as they guided me downstairs. They kept me busy: setting up new phone/cable service, buying tv’s, taking toys and contraptions you never got to use from the basement to Goodwill, sorting and packing some of your other things and safely storing them in the attic, cleaning out extra-large items abandoned in the garage, organizing copious amount of medical bills which somehow got backlogged in the insurance system, and attempting to make me eat. This was just three months after your Dad moved out, and left me holding a shit ton of bags of shit. Thank goodness for Momma’s girls; they swarmed in and helped me take care of a lot of that shit. Alas, this year I navigated my way to work. While my body was present, my mind was far, far away…recounting every detail of May 8th, 2012. Scene by scene, the reel started playing in my mind. I relived every minute that led us to Dr. D’s, which lead us to the ER, which lead us to the HOT unit, which ultimately lead us straight to the depths of Hell. Right around the time of day you were officially diagnosed, Allison appeared, grabbed my hand and said, “Let’s go.” She knows just how to make Momma listen. Your girlfriend, Ms. Nicole smiled knowingly and said, “Go. I got you. Please go.” And, just like that, two of Momma’s loveliest lovelies saved her heart once again. Allison had just come from Children’s Hospital. Somewhere along the way, I mentioned how much it would mean to me if PaxLove was spread throughout the HOT unit and the Clinic on May 8th. Allison and Erin found a way to make it happen – even though it meant taking a 1/2 day off of work, and exposing their vulnerable hearts to the very place in which you ended your brave battle. They packed your Treat Cart to the brim with ‘happy’, and rolled it right through the HOT unit and right into the hearts of so many brave, little warriors. Have I mentioned how much I love those girls? After work, I met up with Lala and her crew at Papa & Gg’s house. Lala received a “Cold Water Challenge” earlier in the week; she fittingly saved her debut for the most appropriate day. The point of a “Cold Water Challenge” being to jump into cold water, or make a donation to the charity of your choice. Living in Wisconsin, particularly on the heels of a Polar Vortex, finding cold water was NOT a challenge. Willing oneself the mental toughness to take the plunge – a far different story. Lala wasn’t fazed; she said, her super-hero nephew demonstrated far, far more bravery in his (ittsy bittsy pinkie) than she could in a lifetime, muchness by jumping into some cold ass water. Not doubt.  So, into Papa’s lake she went  In turn, she got to challenge three people to do the same.  She challenged her friend Sandy on the east coast, Beth Kille in Madison, and Britta in Cali – to jump or donate $24 – to mark 24 months since your diagnosis. Her battle cry was heard – and despite braving the cold waters, those ladies donated anyway. And they donated $100 each! You certainly have a way with the ladies, lil’ man. Mother’s Day was a bitch to navigate. I spent the day with Lala, the three musketeers, and Nana. Once again, I was physically present; but my heart was a million miles away – searching for you. The day took forever to end. Although I strained to feel you with me, to see a sign, sense a glimmer of your soul somewhere in my surroundings….I didn’t. And despite being in the company of some of the ones I love the most – I felt completely and entirely hollow and alone. It is oft said that being a mother is the hardest job in the world. Well, being a bereaved mother – is unbearable. The countdown is on…15 more days until stupid May is over. (Then I begin dreading the arrival of July.) I am so sorry you got sick. IMG_2098

Stay with me, Sweet Boy…

xoox

Momma

hiraeth. you are my forever home.

Diddy,

I spent the afternoon doing one of my favorite things, with one of my favorite people. I had a “special day” (aka “Day of All Yes-es!”) with your super hero side-kick cousin, Finn Foo. Whenever Finn and I set into the world together, I feel as though I could conquer the universe. I also feel more vulnerable than when I am in the presence of any other person; as million an one vibrations of how life should’ve been echo through my bones. I remain convinced he carries pieces of your heart within his soul, and pieces of your soul inside his heart.

After an action packed day, Finny climbed into “his side” of bed and began fade into a slumber. Moments before his almond colored eyes closed for the night he said, “D.D., When can I meet your other kids?” Equal parts confused and rattled by his query, I quickly assured him I didn’t have any other children. Sleepily, he persisted, “…yes you do; you tell stories about them all the time. I want your other kids to be my cousins just like Paxton.”  Oh sweet, innocent, adorable Finn.

Silenced by the need to stifle my sobs, I was unable to explain that when I refer to, “…one of my kids” – I actually mean, “…one of my students”. For once, my lack of composure likely worked in my favor.  A conversation of that nature would’ve only further confused the little guy. My arm was the only part of my body that wasn’t paralyzed by the reminder of Finny’s ever-complex existence of trying to navigate life without you – his wing-man. So I used it to stroke his hair across the top of his furrowed brow. I managed to eek out the only words which needed be said: “Paxton is my only child.”

As always, the voice inside my head ensued on one of its familiar rants. I’ve resigned myself to the fact that it’s talking to the ‘other people’ inside my head. So it’s fine. “Paxton is my only child. He is my only, miracle child. He is my only, miracle child who I waited for my entire life. He is my only, miracle child, who I waited for my entire life – and he is dead.”

My only child died. He was diagnosed with cancer when he was just 12 weeks and three days old. In 146 days, he raised an entire village. In less than one second, he stole my heart. Without uttering a single word, he rewrote the definitions of bravery, courage, grace and peace. My son took his last breath while safely tucked in his Daddy’s arms…with his cheek pressed against my own. I felt the warmth of his last breath brush across my lips. It is the only good-bye kiss I will ever get. And, it will suffocate me for as long as I am breathing. My only child is dead. 

No matter how many times I say it, even if it’s not out loud and only to the ‘other people’ in my mixed up head, I cannot wrap my mind around the incomprehensible truth. You are dead. I am not dead; yet I am not alive. I am fighting to live; yet begging to die; breathing yet suffocating; attempting to exhale, yet holding my breath; smiling on the outside, yet crying on the inside. My existence is every parents’ worst nightmare; only it is not a dream-state nightmare. It is a real fucking nightmare. It is my life.

Other parents complain about their kids spilling kool-aide on their carpet, their homes being a mess, their laundry piling out of control. Whenever I hear such banter, I swallow my grief whole while I silently beg to choke to death on my wishes to have problems just.like.theirs. Mud-stained, sticky-carpets; spilled milk, smashed peas and crushed gold fish crackers randomly strewn across my kitchen floor. I ache for the signs of the living, breathing, playing, alive in my home version of you. I long for the iterations of all that could have and should have been.

Instead, I have an empty chair at every meal, ‘loads’ of laundry that make me twinge with guilt and shutter with rage that it’s all I have, again this week, to wash. The contents which encompass your entire life sit neatly stacked in plastic bins – which have been organized with acute precision, in my attic. I can’t bring myself to verify as much – but, I know in my soul they now smell more of ‘stillness’ than of you.

It is true, I refer to my students as my ‘kids’. It is also true that I love some of them in ways the majority of the planet could never understand. In many aspects, I consider parts of them to be mine. I also love your crazy daisy, adorably unique, and perfect in every way cousins well beyond my own comprehension. I know for a fact parts of them are mine.  From the outside looking in, my life appears to be chocked full of love, from a vast continuum of children young and old. Rest assured, it is always empty. I’m left with an equation that never equates.  No matter how many times I recompute, the only one that matters – the only one who is really mine, is missing. A million more children, and a trillion more blonde haired, blue eyed boys, could never replace or erase the pain of missing you.

There is an eternal hole in my heart and in my life. It is the precise size and shape of you and only you.  No one and nothing will ever be able to fill this hole. Despite the incomprehensible complexity of being a bereaved mother, all that truly matters is quite simple. You are my son. You are my heart. You are my soul. You are my dream come true. You are my home. 

Diddy, you are as real to me now as you were when you were here in my arms.

Stay with me, Sweet Boy.

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xoox,

Momma

a defense lawyer stops me in my tracks. because he knows you.

Paxton,

Tonight I ended what was a very difficult week with a “not-so-happy” hour with two of my lovelies from BCHS. I wasn’t in the mood to be there, but familiar with their persistence in integrating me into the world at-large, I knew it’d be easier to join them. So I did. I made it to about 6:30 before I was ready to leave. As I approached my car, a man parked next to me quickly popped his head out from the backseat of his car where he was putting his child in a carseat. He said, “Excuse me. What does your license plate say?” I knew he was talking to me; but I froze – speechless and paralyzed. He continued, “Does your plate say, Paxlove”? I studied his sincere face and steadfast eyes as I faintly replied, “Yes. Paxlove.” He excitedly persisted, “Is it for Paxton? The baby? The little Peaceful Warrior?” I almost collapsed onto the goddamn pavement.

Before my legs had a chance to give out, he broke into a 40 yard dash in my direction. As he jogged towards me he yielded his “Paxton” bracelet in front of him like a white flag. Meanwhile my friend took over the talking part and proudly proclaimed that I am your Momma. Once in front of me, he put the bracelet an inch away from my eyes and exclaimed (repeatedly) that he wears everyday. He went on to explain how he learned about you and your brave fight. He said he attended PaxFest and donates to your foundation. Most importantly – he told me how he finds daily strength and inspiration through your brave soul.

As I attempted to absorb the scene unfolding around me, I noticed his wife had come out of their car and was now standing just steps behind us. Her hand was over her mouth. Tears were streaming down her face. As our eyes met, we innately stepped towards each other and hugged tightly. Through a tear-filled voice, she told me how you changed the way she mothers her son…and that she marvels at how I find the strength to continue to live without you. These kind-hearted people said so many endearing things to me. All of which I will hold close to my heart for many, many moons to come. The dad ended the conversation by telling me he is a defense attorney and that whenever he is in trial, he rubs his “Baby Paxton” bracelet to find strength and clarity. For he is reminded that whatever he or anyone in the court room is experiencing, or has experienced, pales in comparison to what “Baby Paxton” endured.

The entire time this couple talked to me, I literally did not utter a single word. In hindsight, my inability to speak makes me want to punch myself. I should have taken out my wallet and shown them pictures of you. And told them how everyone who was lucky enough to be in your presence noticed how peaceful (and beautiful) you were. I should have shared with them how (before you were sick and stopped feeling hungry), you would stop mid-suck while eating your bottle, smile right at me – and then happily resume eating. Or let them know your favorite CD is Coldplay’s Rock-a-bye Baby, and that you loved when we would dance around the dining room and sing, “I like to eat, eat, eat apples and bananas.” I should have relayed the stories of how you’d stare into Mr. Cow mirror and “Ooouuuooo!” so fiercely at the site of your adorable reflection that the entire house would erupt in laughter.

On top of failing to tell them any of the many things that make you incredibly special, I deeply regret that I didn’t think to ask them their names. While I hugged the husband, I did manage to eek out the words, “Please don’t take that bracelet off.” (He assured me that he wouldn’t.) With the exception of one simple sentence, I stood mute as two strangers told me how you have changed their lives. In exchange, they allowed me to embrace them as though they each contained a small part of you. I am sorry if I hugged them too tightly. I am more sorry I didn’t tell them about any one of the multitude of things which make you my uniquely perfect Paxton.

Very early this morning I was overcome by one of the greatest moments of despair I have yet felt. I don’t entirely know why. I guess this roller coaster of grief, bereavement, or grief-that-interrupted-the-initial-fucking grief will never make any sense. I do know that I literally begged you to send me a sign if you were still with me. Anything to prove that despite the emptiness in my stomach and the hollowness in my heart, I am not entirely alone in this world.

I believe with all of my heart, you sent that man to me tonight. You rescued me from the abyss of grief which I must consciously ward off from swallowing me whole. More than anything in this entire world, I would give anything – anything – to be the one saving you. It should have been me. Never you.

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I miss you. I love you. I’ll look for you in my dreams.

Stay with me, Sweet Boy.

xoox.

Momma