Christmas letter to my lost love.

Hey sweet baby,
I miss you
Last year we spent the night cuddled up together laying in my bed. I watched you peacefully drift to sleep and cherished that we had made it to Christmas together.  I got one Christmas with you. The best one of my whole life. You were my greatest gift. You morphed me into a superhuman I didn't know I could be.
   We woke up Christmas morning and opened your gifts together. I remember being so upset I couldn't buy you everything I wanted to give you. But you didnt care, you loved me regardless.  Our time together was your gift to me. Mine was to love and care for you unconditionally.  We were such a great team my sweet love. I wish I was putting you to bed and wrapping gifts for you to open in the morning with Ian. Mommy's heart hurts today babe.
   I keep a straight face to the world. Even my friends seem to forget sometimes. I don't want to see baby girl stuff. I still can't go into Targets baby section without my heart shattering into teeny pieces. Damn babe, some nights I can't even sit on this bed without my throat clenching while I blink back the tear waiting to pool and drop onto my cheeks.
  I was doing so well today. Then I stopped and turned and saw the tree I got you. I decorated it with some of your favorite things. I'll put it out for you every year and add more to it each time. It's beautiful and purple, which is our favorite,  obviously.  I know you love the cupcakes and butterflies on it. Gammie set up my village all around it. You know, because even our holiday world revolves around you. 😊

I really miss you.

Thank you for giving me the best memories of my life. You taught me so much in your short time with me. I promise I will never let your light stop shining. Everyone around me can forget but I wont. I will be at every Memorial service, candle light service, and walk to remember my body can take. I will never forget you Adalynne. I promised you I would give you All Of Me and I will never let you down.
Merry Christmas Adalynne Marcella, my true miracle and the best gift I could ever have gotten was waking up with you still breathing on December 25th 2014. I love you forever.

Love Mommy.

 

Shine brighter than a diamond

Hello sweet souls,

  Today is Worldwide Candle Lighting day for all the children across the world who have left our arms too soon. I found out about it just a few days ago and was relieved the Kate B Reynolds Hospice House was holding a candle ceremony.                    
  Last time I was here I ran in, dropped brownies off and left as quickly as I could. Before then... was the day I said goodbye to my warriors broken vessel and let her soul go free. I stood and watched the first sunset my baby girl could see. I remember it so clearly. Bright hues of pink, blue and purple beamed across the skyline. Filling my heart with hope I'd get through this. Reminding myself that she was now painfree and whole. I feel that feeling each time I look up in the sky. My heart still hurts though.
  I thought I would handle tonight so well. I'd light a candle, celebrate her light shining, it would be all good. Then, it came time for me to say her name out loud. I was among all these other families feeling a similar stinging ache in their souls but, saying her name.... I almost didn't get it out. I choked back big ugly sobs to speak the words.
Adalynne Marcella Scherer
Saying it out loud made it feel too real. A type of pain that I can't describe in words. Only the ones of us already known to this feeling understand.
  This was my first one of these types of things. I was extremely happy to have some of my support their with me. They spoke her name and shined her light with me. We cried together and then laughed at Ian who was ready for the doughnuts they served afterwards. He always keeps us laughing when we need it.
  Even though tonight was hard for me I know it will get easier each time.  Next time I'll be able to say her name with a little more ease. This hopefully will be the hardest one I go to. Maybe next time I'll be ready to speak to the other parents instead of holding my bear and breathing back tears. Maybe not, I'm not sure yet. For now, I'll get through each day the best I can. I'll strive to shine the light of my warrior baby each day.
Have a good night sweet souls. Hug your babies tight for me and all the parents who can't tonight. 

Much love,
Heather.

Tick-tock

  Tonight is one of those nights where my mind won't stop and my heart is heavy. Tonight, I scooped up my babybear like I used to hold my baby. I held her head and stroked her back, just like I used to with my baby. We have been laying in bed snuggling while, silent tears run down my face, just like I used to with my baby. It feels the same, yet so different.  Adalynne and I used to be up for hours on end throughout the night. Working through breathing episodes and seizures. Id spend my nights trying to get her to eat maybe 2 ozs over 3 hours, most of the time she would throw it all back up..on me. #Vomsquad Then, we would lay together and snuggle and I'd kiss her all over. She would sigh at me, like the diva she was. I would lay there and silent cry, thinking this could be my last moment with my warrior earthside. Now, I lay here and cry wishing for one more moment.
  Days have gotten easier but, the nights.... oh the nights when I lay alone in my bed are the worst. I still look over for her crib even through its been over 6 months since she was in it. I hear squeaks in our wooden floors and panic thinking "oh no, the breathing episode is starting" but, it's not. It's quiet... and lonely...
   Tonight, I snuggle my bear and try to feel her again. I don't know how parents live after the loss without something to hold on to. This bear holds my hand, and heals my heart. I gave my baby's body to our hospice nurse and she returned to me in this bear. I'm so thankful for my bear...

But damnit I miss my baby.

Tonight is now tomorrow and tomorrow will be better. Deep breaths till I fall asleep, holding my bear as I do everynight. Grief knows no time limit and doesn't care if you're exhausted and fed up with crying. Let it happen naturally and then march on.

All my love readers,

From one sad mommy tonight.

Thanksgiving

Hello beautiful souls,
I hope all of you have been enjoying your families today, and eating tons of good food obviously. Today is a day of reflection of the things most important to us. Over my journey this past year and a half I've started learning to realize what's most important and what I am thankful for. My family, friends, food to eat, and a home to live in. I can go on and on of things I've started appreciating more and more. But, today is slightly different, and deeper than the usual. 

Today, I stopped and reflected once again. What am I most thankful for this thanksgiving without my baby? I've thought about this all day and it finally hit me. I am thankful for my body. This vessel  that holds my soul. This body has been through hell and back and yet, she's still standing. My body grew, carried and delivered my sweet warrior. The place Adalynne loved the most was right on my chest. My body fed my baby for 4 months out of her 9 months alive. This vessel survived nearly dying at 18 in a car accident. And even, multiple surgeries throughout its short existence. 

It's full of scars and stretch marks and will never be as skinny as I want but, I'm healthy.
My body and mind are healthy in a world full is disorders and disease. I would have traded places with my baby girl in two shakes of my hips, but life doesn't work like that. We get what we get dealt and we can't control what our hand will be. I was able to open my eyes, get out of bed myself and go cook breakfast this morning.  Some people can't even do the first of those listed. I'm so thankful for this body and how much it amazes me each day. I'm proud of the progress my body has made and the differences since having my sweet girl. I'm thankful for all types if things each and every day but, today I'm thankful for me.  Thank you body for allowing me to sob on the floor and then push myself up, wipe my eyes and carry on with my day. These moments of weakness followed by strength keep me going. This body gives me hope for the things I can do tomorrow. 

Enjoy the rest of your night with your family and be careful to the shoppers that are about to be out n full force. And, love yourself a little today when thinking of others. Sometimes we overlook ourselves too much. 

All my love readers,

You guys are freaking amazing. 

Purple dress

Hello all my fantastic readers,
Today has been a pretty good day so far. In my happy mood I wanted to share a story with you all that I don't think I've ever mentioned on here. Adalynne's purple dress. Some of you might remember last year we had some wonderful and very close friends get a spaghetti dinner benefit together to help raise money for us (thank you to the Nichols family and friends and everyone who came out to support us. I love you all so dang much.) The family gifted us this purple dress that was so beautiful I obviously cried. We took this beautiful gift that was too big for her tiny body but perfect for pictures to our beloved friend Deborah Hendrix. Deborah is an outstanding photographer that did pictures of Adalynne from birth to hospice. (Another huge thank you and big hugs for her.) These pictures of Adalynne in the beautiful purple and white dress were stunning. I cherish them along with the others each and everyday. As I type this I'm starring at the very picture that sparked this blog today. Fortunately for me and my family Deborah worked with the funeral home after Adalynne passed. She took one of the pictures of my sweet warrior and used it as her portrait for her funeral. It now sits on our mantle for all to see her beautiful face, in the sweet purple dress.
Right after Adalynne died, mom and I were shopping for candles and jars for her Celebration Of Life. We were both becoming overwhelmed with emotions and decided to go ahead and check out. Standing in the line with a cart full of things for my baby's funeral I glanced over at a shelf and saw a cabbage patch doll, with that beautiful purple dress on. I stopped and grabbed mom and pulled her over. We both starred at the blonde hair green eyed little doll, in an exact matching purple dress. Then our song came on over the intercom of the store. Fighting back tears I told mom she had to get the doll. This was Adalynne's way of giving mom her own bear to hold.
All my life my mother has loved cabbage patch dolls. She has a lot of them put up in boxes for years now. But, I used to play with some of them when I was little. Once we came home, mom found a red headed blued doll and put the dress on her. A perfect fit for our sweet warrior.  Now, we have our sweet baby to look at and cuddle. In that beautiful purple dress.

It's funny how the little things can make our day to day life so much easier. I thank my warrior everyday for showing us her light and love.
Hug your babies and loved ones tight, tomorrow is never promised and each breath is precious.

Until next time beautiful souls.

All my love.

Tip toe, tiny steps.

Hello readers,

It's been a while since I've wrote on here. I was at a standstill point with my grieving. The blow from the organ donation hit me hard. I lost the only purpose I ever had from loosing my sweet baby girl. I needed to regrieve loosing her....
again...

Naturally I did what I always do. Focused on my family and finally myself. Recently, I've lost several people in my life I thought I couldn't be without. I'm doing just fine, and, even better now honestly. I have clarified to myself that I am the holder of my happiness. Luckily, I have a superb family as well for the times I need a pick me up.

Have I said how much I love Flordia? I'm not sure if it's the sunshine or that two of my favorite aunts were in the same continent together, finally! There are few things that makes me as happy like being with my cousins and aunts do. And, I even got a LITTLE tan. I'm about .05% of a slight darker pale then I was. But hey, I'll take it.

I have also found a hobby I have obsorbed myself.. (and my family hehe) into. My greenhouse!!! I love growing plants, it gives me such joy and satisfaction watching them grow. I have lots of different vegetables growing currently. Along with a few flowers and aloe.  They all seem to be doing amazing. During Adalynne's Celebration of Life service I had a lilac bush in her honor. Once I got it home it did extremely well and then suddenly started to die. I tried several different things with no luck so, I thought I had lost the plant completely. But then, the day I got the news Adalynne's heart valves weren't accepted I walked outside and cried on the porch. Once I stopped I looked over and, saw her plant had grew all new leaves. Tiny, vibrant green leaves encapsulated the once bare branches. The most beautiful sight and I knew she was telling me in her own way things would be okay. It just took me awhile to accept it.

Yesterday, was a huge day for me. I finally, after almost 6 and a half months took my Warrior's last box of clothes and things out of my room. It took me awhile and I even layed over it crying uncontrollably. I clung to it like it would bring her back. I dont know why, maybe i thought if i just kept them in here she wont ever have to "go". But, shes gone and it sucks. It doesn't ever get easier, I just have learned to let those emotions happen and then, breath and go on. Regardless of what is going on around me I still feel the pain in my heart each day. Saying I miss her is an understatement now. I see her each day in the sky and feel her once more on my chest. I think she would be proud of me as of recent. Things are finally starting to look up, and I'm looking forward to seeing the veiw from the top for once. We are warriors are we must go on.
Thanks for keeping up with me. And, as always, stay beautiful sweet souls.

Avacado.

One year has passed since Adalynne's brain surgery. I remember being so nervous I couldn't breathe, just kept pacing the cafeteria of the hospital waiting on a call to say things were okay. Once she was finally out of surgery, I was able to go back and see her. My heart was beating so fast while my brain ran 500 miles a minute with questions and hopes of things getting better. As I approached my little babe, I noticed she was covered in iodine, with tubes and IVs coming from all over her frail vessel. Her head was sunken in from the water loss and lack of brain matter. I lost it, big huge sobs escaped my chest and voice box. I apologized to the nurse for my abrupt sobbing. I had held it together for long enough. She made it through and I was so scared she wouldn't.  Her body was so limp and sunken but, her face, oh that sweet face looked so peaceful and rested. I settled down took some huge breaths and talked to my girl.

  After recovery they moved her into the PICU of Baptist hospital. My famuly and i, along with Adalynne's father sat in the waiting room and went over every word her doctor told me with our family, looked at the pictures of her empty skull and felt internally shattered. Nothing would ever help my baby. Even the surgery was for temporary relief and only to make her life more comfortable. It also, confirmed the severity of her case. While waiting in the PICU I was greeted by her nurse who informed me that Adalynne had just had a 5 minute seizure followed by breathing complications so, they put in a nose trumpet in to open her airways. We learned over the course of our hospital visit that Adalynne had been having lots seizures her whole life. Hers just came in a different form than most, no flailing or anything of that sort just staring off on one side. This meant that she had been having at least 5 to 10 seizures a day, news that was very devastating to me and my family. I felt like a failure, like I had let her down. We had went two months of not knowing and I felt that I could have done something to help her..

   The first time I picked her up after her surgery was one of the craziest moments of my life. I carefully scooped her into my warm embrace, while weaving around the IV's and monitoring tubes then, finally settling into a rocking chair covered in warm blankets because we could not keep her body temperature at an appropriate level. I could feel the water in her head slosh from side to side. This movement turned my stomach into something similar too two octopi fighting. She would just moan these tiny little moans of pain during movement crushed every part of my soul. But once she settled into her mommy sweet bliss for us two. I sang All Of Me to her like, I always did. That moment in time stood still for me. I can sit here, close my eyes and feel that moment again. Moments like this, are the avacado to my life.

Adalynne though, had utterly no desire to eat. I tried and, I tried but she just didn't care for it. Of course, me being me refused to let her leave the hospital until she was eating again. Once she started to the surgery had set us all the way back to the beginning. She had to relearn how to eat just like we did in the beginning of her life when she can suck. We went from a spoon to a syringe and then finally back to a bottle. It took twice as long for her to learn this time, and most of it just came back up unexpectedly at the most inopportune times.

   Over this visit I met some outstanding people. It was one of those moments I truly realized the impact of our story and the amount of love that we had behind us. For those that have kept up with my blogs or, the ones that are new to my story that have gone back and read, you all might remember that I asked my readers to wear blue the day of her surgery.  Adalynne diagnosis was hydranencephaly but, she also had hydrocephalus as well. Her hydranencephaly was the reason she had to have the surgery. September is a month dedicated to hydrocephalus awareness. Hydrocephalus causes excess water on the brain.  To bring awareness to this situation that many of our citizens are faced with and to have a little bit of support during my tough day my friends and family were to wear blue for us. To all of you that sent me pictures and posted raising awareness and sending love, I have to say thank you. They were the reason I got through that day. When I started to feel like I was breaking it was so wonderful to be able to see we were making a difference and bringing people together for love. Thank you all so much for the support and continued love.

It's been one hell of a year since that day. Looking back this was a huge moment for us, another game changer. I'm thankful for the lesson I learned through that time. My strength reached a level I didn't know possible. You all had a huge part to play, still do every day. Thanks for reading my heart on pages. I love you all beautiful souls. Give a loved one a extra hug, just because. Much love.
Until next time.

Heather

P.S. 

I know of others who sent me pictures I just can't get them currently. My laptop crashed with all our pictures... thankful for Facebook today.