Long Time No Speak

A Wave of Light.

October 15th.

It comes every year and this is this first year I realized that today, is basically my Mothers Day. Today, the world lights a candle at 7pm for all the babies gone too soon. It's to honor the memory of all the angel babies and unify the parents of loss.
My usual ritual for this annual evening event is sitting and crying alone at 7 while I light my candles and think of my girl.
Why-
Because she's not here for me to love?
Because she isn't growing up?
Because I don't get to see?

Those were my reasons years ago.
Now, I feel peace in her passing.
She. Is. Free.
Now, don't get me twisted in that I still have cried a bit while reading past blogs (that I desperately need to go back and re-edit) and just remembering life with her. It is such a distant memory now... that saddens me. But, I am so happy for her. I am happy she doesn't have seizures or breathing episodes. And to be Frank, I'm really damn happy I don't have to watch her do it anymore. For the most part, I don't have flashbacks or dreams about them anymore either. I have come to really enjoy my "Inactive Motherhood." A term that I had made up for my own self.
I kept getting so wrapped up in the thin line of being a mom and not and in thinking of Adalynne at a shop but then, reminding myself she died. So I came up with my own definition for our story and stopped trying to fit into a precut box.

Tonight I'm changing the game.

Today is the day we celebrate. The unique stories of parenthood. The ones that don't always get told because it has a sad ending to a chapter. I urge you to remember, a sad chapter doesn't mean a sad book. Tomorrow will be better.

I missed writing to you all. It's been far too long. Thank you for reading.

All my love in the universe,

Heather.

Floatin'

  I saw your wings in the sky last night. It was just for a brief moment through the trees. The clouds aligned perfectly with the sun creating a gorgeous view that looked as though the sun had huge feathered wings wrapped around the sky. I didn't catch a photo, I know that moment was just for me. But, I did chase down the sunset and snap of photo of the beauty. Those moments are forever reminding me that, you're okay. 
   Me, on the other hand..... not so much. Today is your day of birth. Three whole years ago we met and the universe changed. Your arrival brought a new found strength for us all. Hence the day  Warrior Day. To not only celebrate you but reminding us all that we became stronger that day too. I hope others are feeling strong today.
   I am not. I do not feel strong today. Quite the opposite actually. Nothing has gone how it was supposed to. None of my plans for my life have happened and I'm left standing here wondering what the heck I am even doing. I feel like I'm floating, afraid to move because I know a fall is coming. Every single thing in my life has fallen apart these past years. Nothing makes sense, nothing I'm doing is enough. It is suffocating. The strength I used to feel as your mom, I no longer feel. I was a silver lining kinda gal. No matter how shitty a situation I ALWAYS found a silver lining. I can't seem to find a damn one anymore. I don't write, I don't dance, I don't travel... and for the life of me, I can't find the light at the end of this dark ass tunnel. I know it's there, I'm pretty sure it's just a long way away from me.
   I should be happy. I should have a successful job. I should have my own place. And I could list a whole lot more of the things I "should have" by now. None of it's happening. I just feel lost. Completely and utterly lost. No-one knows, but you. For the whispered conversations we have after everyone is asleep, I tell you it all. I have no adventure or excitement anymore. Today, I wanted to wake up and drive straight to the mountains. I wanted to look out, see the rolling hills and valleys, study the way the earth was formed millions of years ago and feel..... insignificant or maybe..connected. I can't tell which I'd feel sitting in my dark bedroom currently. I just know that's all my soul wants. But, it's not gonna happen because we both know moms car is a piece of shit and won't make it. Or if we did it wouldn't start along the way and we would be stranded on the side of the road, once again. At least now I don't have to worry about you dying in the back seat of my car on the side of I40 (you and your dad can laugh at that one)
  I know this has to be the worst birthday message a mom could send her little girl on her third birthday. I'm sorry. But, life as a baby-less mother is hard as fuck. I have no fucking clue what I'm doing here shrimp. I only want to make you proud... I'm trying but nothing is seeming to work. I'm just floating and missing you extra.

All of me
loves all of you
All your curves and all your edges
All your perfect imperfections

You and me Babe. I just gotta trust you'll help me figure it all out. Thank you for making me a mother 3 years ago. Thank you for fighting as hard as you did that day to breathe. Thank you for our beautiful memories together. And thank goodness I have my Adalynne bear to talk to you through. You're my ace boon coon and Ill love you forever. Happy Birthday Adalynne Marcella, The Noble, Beautiful, Young Warrior. May your light shine always.

With all my love

Your crazy mom.

Smile for the camera?

This post was inspired by my memories on my facebook page, the photo is at the bottom.

EEEKKKKK. THIS was the ONLY time I ever saw her smile!!!! And I freaking caught it on camera!!!! #MOMWIN
**back story time**
   We had a rough night beforehand and, an even rougher day. I believe it was a Tuesday, that's when our hospice nurse Lisa came.  This beautiful photo below was after a three-hour episode. Three hours of her struggling to breathe and probably one long seizure or maybe several, we will never know. Thankfully our hospice nurse came in the afternoon while the episode was still going on...
   After I had told her what had been happening she gave me a look I had been waiting for. You see, we had been prepared for the moment I would need to use her seizure medicine Versed; it can be dangerous and we didn't know how it would affect her, I was scared it would make her stop breathing for good. I had been trained how to use it, holding it upside down quickly pushing it to spray the medicine into her nose. We had gone over when to use it but, I was wary of the side effects so we had it for emergency only. That day, was the emergency.
   After Lisa and I talked we decided it was time to try the Versed. She shot the medicine up her nose and Adalynne did not like it one bit. 10 minutes of my heart racing waiting for my baby to die right then she started to calm.. she settled and then, her little cheek would twitch up into a smile.  I never saw her smile. Never saw much happiness or emotions (except when I took her out of the bath or stopped playing rap music in the car) this one moment.. for a beautiful second I was able to see her smile after watching her suffer tremendously for several hours... I'll never forget how my heart danced watching her. It was our silver lining to a dangerous and scary day. She always let me know she was okay. She still does to this day.

To my sweet girl, I'll see you in the sunset tonight. I'll kiss you in my dreams. I'll love you with every breath this vessel gives to me. I'll never stop smiling for you.

Healing Memories

December 13th, 2015... that was my first event and definitely the hardest. It was a special event for families that had lost children.  I didn't speak to anyone and could hardly say her name in the circle. I choked on huge sobs as her name attempted to escape my throat. But, I walked away feeling slightly better and stronger.
   Flash forward to last night's event. I felt happiness walking the garden. It's bittersweet happiness of course, because, I miss Adalynne so much I can't breathe sometimes. Then I remember, her soul is free from her broken vessel. I walked through the luminaries that lit up the pathways I used to walk with a stroller and an oxygen mask tucked underneath. As I walked around the zen garden taking in the beautiful view I spilled coffee all down the front of me. Like, seriously from my shirt, vest, leggings, leg warmers, and my damn shoes. A long line of warm (at first coffee) I headed to a bathroom to try and dry off some. My path leads me to the stairs. As I went down them I remember a specific memory from Adalynne's stay at the hospice house...
  It was a Wednesday, we had a cookout with all our friends and family. One of my friends was holding her and I glanced at Adalynne's face.... she had turned blue once again.. I scooped her up and, went into action. I did everything I normally did when she stopped breathing and then, she eventually started back, little tiny breaths. I put the oxygen mask back on her to help her teeny breaths be as rich as possible. I was sitting on a bench, surrounded by our closest family and friends. My brothers were beside me, and I just lost it. I sobbed and sobbed... they put their arms around me and we all cried together. It was heartbreaking and beautiful. I finally gathered myself and the party continued.
   Eventually, she stopped breathing again and I decided it was time to take her back inside. I had her in my arms, my favorite hospice nurse was beside me with the oxygen. As I headed for the stairs fearful of her death my body gave out.. I collapsed to the ground while everyone scurried to us trying to help. I held my dying baby sobbing on the concrete, I couldn't do it anymore. My aunt asked, "Heather, what can I do?!" I yelled" SAVE MY BABY" my eyes poured tears as I could feel my heart breaking even more...

Nothing and no one could save her. That truth was too painful.

   Yesterday I walked down those same stairs (with coffee poured all down the front of me.) I thought of that memory and realized, I survived. I am surviving the greatest loss of life. It's hard and messy and, full of migraines from crying so hard. Each day I wake up and get a little bit stronger. It gets a little bit easier to deal with life without her. I don't want to but, I have to.
  I'm very proud of myself. I didn't cry yesterday, made cupcakes, walked the gardens, felt her love and remembered how free she is. That freedom is a blessing. The weeks leading up to her death were the hardest for her frail body, she fought a good fight and now, she can see the beauty and her soul can fly freely.
   Before I left I took the leftover cupcakes inside. Hoping to give something sweet to a family going through their worst days.. I talked to some nurses and saw a familiar face. One of Adalynne's nurses. She smiled and said she remembered me. As she hugged me she told me she thought of us often. That warmed my heart so much. I thanked her for all she did, there isn't enough thank you's I can give to Hospice and all the nurses who helped us.
     They were my backbone and, when I couldn't stand anymore, sometimes, they literally picked me up off the ground and reminded me, I CAN DO THIS. I will survive this, I will be stronger and love harder because of this journey. I'll always look to the sky and be thankful my girl can see the beautiful sky and glimmering luminaries.

Much love to you all. Hug your babies for me please.

I spy with my little eye.

   I hate cleaning my room alone. I always seem to find things I don't want to find. Some days I smile thinking Adalynne set them there so I'd think of her, others I cry at how bizarre my life was/is. I've kept a running list of photos of these stinging finds. Today's find broke me. Today I was cleaning clothes up and looked down to find "The Bag." Now, this isn't any bag, it's a biohazardous materials bag that I kept and carried any time I traveled. This bag was The Kit I needed for...after Adalynne died. It held saline and eye patches that I was to use once she passed away to preserve her eyes for donation. It's labeled  Hospice Kit/Post-Mortem Eye Care. If I didn't have this when she died I risked losing her ability to donate.
   The thoughts rushed in my brain the moment my fingers touched its plastic. I wonder if they actually used her eyes for science or threw them away like her precious heart valves. (Still so hurt, angry, bitter and broken with Carolina Donor Services)  How many parents had to carry around a Post Mortem care bag with their baby? Who put this in their diaper bag when they took off to take their daughter to see their dad, who lived over an hour away. Or, trips to different states to visit family for a Hello and Goodbye visit. What kind of crazy world I lived in, huh?
  Over these months I've found baby shower cards mixed with "Sorry for your loss" cards from her funeral. I found an envelope with her death certificate I never saw before. Or, maybe I did and my brain was like "NOPE." I also found the lovely "Certificate of Cremation" a sucker punch to my throat. It was together with her certificate you get when your baby is born in the hospital, with their little feet on it. That one left me gasping on the floor alone. One of the funny finds was a letter from the funeral home and inside was a plane ticket. I laughed when I saw those two together. My healing was jumping on a plane to visit family. Something I desperately need again. There is nothing like making more memories with your favorite people to heal your soul a little.
  I have a stack in the living room of papers and basic bullshit from Carolina Donor Services. I'm so pissed at them I just want to burn it all but, I can hear Adalynne sigh at me. "Mom, it is what it is, we tried," I think that's what she'd say if she could've spoken to me. I hope they still used her donations for science. Saving three babies would've been better but, we tried.
   I also find morphine caps at the weirdest times and those, I giggle at. I smile at the fact she no longer needs it. No more fighting through a seizure to get her to swallow morphine. Or blue sticky medicine running down her sweet cheek. I still have a basket of her morphine and seizure meds in a basket hidden under my bed that I can't deal with yet. One day.
  All these finds are bittersweet some more bitter than others. I cry and little and then take some deep breaths and try to finish cleaning.
   What a crazy life I have. I hope all of you are having a better day then finding a Post Mortem baby bag. Please, hug your babies for me. Never take for granted your sweet gifts of life. Even on the hardest days remember, you don't have to carry around a bag for your child's death in their diaper bag.

Much love to all you beautiful souls. Enjoy the sunshine and your precious little ones.

Heather

Wishes for tomorrow

   I keep thinking this will get easier. That one day the tears will stop. One day. Most days it's tolerable. Most days, I can handle the grief. And then, I look through photos of my daughter and my heart aches. The hot tears build up in the corners of my eyes. Blinking them away doesn't always work. Sometimes, they drop to my cheeks. Those tears sting my cheeks with a reminder that this pain, it will never go away. It will always be here taunting the back of my mind each day.
   Each time I step out in public and see a little girl running around, I'm reminded mine will never do that. Each trip to the store is carefully mapped out to avoid the baby sections. If I don't stick to my plan you'll find me staring at baby clothes like a deer in your headlights late at night. We both are not supposed to be where we are but, here we are, stunned and scared. And then, I end up crying in public which, I have a rule against. (No ugly crying public, it helps Noone and, makes me feel worse)
   When you have a baby, your brain changes but, when your baby dies, your brain doesn't switch back to how it was "before." I still see clothes and think "oh I need this for Adalynne" that thought is typically interrupted by the "uhhhh nevermind Heather, go get some kale and leave asap" thought. (Kale makes me feel better, don't judge)
   Ugh, the holiday season is so hard. Well, really each day is hard. Today is just a lazy Thursday and it's hard to sit on the couch and not cry uncontrollably. I try to remember all my lines I tell myself during these days; she's free and whole, she's no longer in pain and suffering, this was our story, you must accept it. Sometimes, they don't work and I'm just angry and sad.
   When those lines don't work, I resort to my next set of lines I tell myself.
   Tomorrow will be better. Tomorrow, I'll be stronger. Today I can be weak, sad and hurt. Today, I'll miss her till I run out of tears and my head pounds from crying. But, tomorrow, tomorrow will be better.

Much love to all of you beautiful souls. Hug your babies for me today. A big, huge, squishy hug.

Perfect Imperfections.

It's been two years since Adalynne's surgery and on my memories, the photo below popped up. It triggered some thoughts.

I remember scooping you up, your body was so cold even with all the warm blankets snug around you. I bobbed and weaved through all the wires and cords, my heart would race and then, skip. Eager to hold you to my chest but, fearful I would hurt you. Your teeny skull was concaved in from the lack of brain tissue and, fluid. I remember feeling the fluid slosh around like a bottle turned upside down. Or when you drank too much water too fast and your tummy sloshed about.
  You would let out these heartbreaking whimpers that crushed me to hear. I needed to hold you, you needed me to hold you. We untangled ourselves and slowly, steadily settled into our chair. In this moment I thought my heart would burst from my chest! It was beating so fast and then... peace. I took a huge breath of air, soaking in the moment. I had waited a very long time to hold you. That was the longest time we ever went without our embrace I think. Until now of course.
  You seemed to be happy after we settled. I talked to you and sang our song. Reminding you, I would give you all of me. "All of me loves all of you"... "All your curves and all your edges All your perfect imperfections"... Remember I'd dance with you in my belly and rub over our womb as I sang that to you.
  We starred at each other that day as I sang.. "what's going on in that beautiful mind, I'm on your magical mystery ride".. I'd always tear up on "And I'm so dizzy, don't know what hit me but, I'll be alright."
I tried so hard to accept that line. I'll be alright. I didn't know if I would be. I just had to be, for you. Especially this day. I had to be alright, for you, my sweet, sweet baby.
  I can close my eyes and relive this memory. The way your head felt different and your eyes were no longer pulled open. Your little sassy sighs when I begged you to eat, just a little bit. The way the iodine made your red hair even brighter but, I was too scared to wipe it off, you were in so much pain.  I found a strength in that hospital I didn't know I had. I knew everything you needed, some of the nurses tried to be the boss... hahaaha poor women hadn't met a mama bear like me I guess.
  Being your mommy was the moment I had waited for my whole life. I never felt more like myself than when I was taking care of you, my baby.
I'm so happy your no longer in pain. I try to celebrate your freedom without the aching to hold my number one babe. Thank you for teaching me more about life than I could've ever learned in a classroom or job.

I cry and sometimes yell, to just hold you. As many times as I say I'm alright, I'm not entirely.  I miss you so so so so much. I always will Adalynne Marcella.

"My heads under water but, I'm breathing fine. You're crazy and, I'm out of my mind"

All my love
Mommy.